Ibrance (Palbociclib)
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Hey Jobur Cyle 10 FANTASITIC!!. And spaghetti it is! But we gotta get to know the spaghetti, you know
Thx so much for the input on Xgeva.
Until just recently we were so afraid of Dani doing exercise of any kind, she missed out going with the kids rollerblading, skiing, ice skating the whole nine yards, bcs w all these Mets all over, but finally just a few wks ago, she started Yoga, got on the treadmill (very slow), AND the best part she took a chance and went rollerblading with the kids, they didn't even know Mom could do that, that's how long she has been cautious. But, now she said what the heck and started to be more adventurous. Z by telling us what you do, and all of you, i think it's so helpful, bcs I tell you the truth it makes me feel more relaxed that she could DO something, I am always scared that she will break something. Her ribs are showing new lesions, but...
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Hi, Everyone! I have just read the last few pages here after taking a break to try and get more sleep and more things done. I tend to spend too long at the computer when I do get on BCO, and am trying to manage my time better so it's not all or nothing. I have missed you guys. Hello and welcome to the new people! I started Ibrance + letrozole after a complete metabolic response to taxol , and have just finished my 14th Ibrance + letrozole cycle. I started at 125, then went to 100, then to 75. Marathon indeed.
Hair thinning: For quite a while my hair seemed normal, but then a few months ago I noticed too much coming out in the shower. I had my thyroid checked, and it is ok. So it is either stress or drugs, I think. When I look at the back of my head in a video or mirror, it seems like the parting at the crown and down the back is getting wider. It is the same place the hair first fell out on chemo. So I did some research and found some options other than a wig or cap, which makes me feel like I have a plan if this worsens. I found out there is makeup you can apply to the scalp, similar to filling in thin eyebrows. Then there are fibers you shake onto your hair that sort of weave into the hair to make it look thicker. And there are little hairpieces called toppers, I think, that you can clip on to cover bald spots. I'm glad to read that for some of you, the thinning was temporary or slowed. A good cut does work wonders.
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Hi ShetlandPony. Glad to hear from you. Been wondering about you.
I've had the hair thinning and it seems to have stopped (I'm at one year on Ibrance at the end of May) but the damage is done. It is mostly thin right on top. I wear ball caps and have a wig for dressier times. I read about those toppers, but also read that the clamps can pull and pull out what hair you have. Need to research more. My hair also has nearly stopped growing. It is short, so I just trim around the bottom every few months.
Hope you are feeling well. Do you have more energy on the 75 dosage? I'm still on 125, but have to say I'm pretty tired of being tired.
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Hi, Kaption! Yikes, I hope the topper clips will be ok. I plan to use one for some dance performances that are coming up. I need a whole fake hairdo over my short hair, and I really don't want to wear a wig because of how it feels. My hair does still grow longer, even though it is thinner. (But hardly any need to shave under arms. Tmi.)
We have both been on Ibrance a long time. I really get the tired of being tired. How bad is it for you? Yes, on 75 I feel like I am living again. I was on 125 maybe three cycles, and was lowered because of mouth sores. Then I did well on 100 for quite a while, but after a while the fatigue got so bad, like running at 30% power. When the timing of my blood test happened to fall at the end of my week off, we realized my counts were no longer bouncing back enough. So even though I protested lowering, my onc waved the blood counts in my face (in the nicest possible way) and talked about infection risk. But I think she mostly wanted me to feel better. I'd say my energy is around 60% of "normal" now if I compare myself to others. This I can live with.
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Shetland, Hi! I know what you mean about a break. I found I needed to dial back a little myself to get some other things done - LOL.
About the toppers...I actually just purchased one about two months ago. I had gone in for a consult at a hairloss place and never knew these things existed. I only wear mine on specialish occasions (or where photos are involved!). Much more comfortable than a wig, for sure! I don't attach the clips to as much hair as they did when they demonstrated, so there's less pulling, and I've never had a prob with it being secure. It makes a big difference appearancewise for my hair loss around front of face. Just kind of sits on top of my own hair and blends in for a pretty natural look.
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hi Moissy- good to hear about the topper. My wig lady did not mention them, so I'll do some research. Would certainly be cooler than a wig!
Shetlandpony- about the time you were posting your comment, I was talking to my DH about asking MO about lowering dosage. I've been seeing her at the very beginning of my week off and my ANC has been 1.0 and 1.1. If I stay on Ibrance (rising TMs and PET scan coming up) I'm going to ask about dosage reduction. 30% of my old normal is about where I am. I felt better last Fall than I have the past 2 months. Would like to enjoy this summer
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jopur - I am crossing my fingers that your hairloss is limited and temporary. Thank you for your observations about scans. You'd really have to have 3 different types of scans regularly to monitor things "correctly". Almost certainly not worth it. But it means there is a lot of uncertainty in the information we get.
I don't believe in bad intentions or hidden agendas, but it is clear that the advice of the oncologists I see at major hospitals follows policy written by a committee and informed by the institution's relationship with the insurance companies. My complementary oncologist has put me on non standard treatments that I believe are helping, but so far the most measurable impact he has had is to order 10-12 tests that normally are not indicated (ie. not encouraged by the insurance company). Two of the tests came back with game changing information that influenced my treatment in a big way. He points out to me how insurance companies are effecting my treatment, and he knows how to get around it. It is good, even important, to have one doc on your team who does not care what insurance companies think.
momallthetime - when i was first diagnosed, one radiologist said, while looking at my scan, "don't do anything that would increase blood flow." This so strongly re-enforced my terror of doing anything that would make the cancer spread or frankly anything at all, that I spent the first six weeks doing nothing. Unfortunately the radiologist knew not of what she spoke. I got sick and exhausted from doing nothing. I wasn't even on any meds.
My current oncologist is a ball buster about exercise. Only this morning did I walk off a massive bout of nausea and exhaustion. I woke up wanting to die and if not die go back to bed, a hike seemed impossible. I left the house making a check lists of the bus stops where I could bail. But I walked my daughter to school and walked back (45 minutes). I felt mentally fuzzy but otherwise pretty good the rest of the day. I think the meds, as well as the med metabolites or toxins from their interactions with the body can build up to high levels and trigger side effects. A simple walk gets the metabolism working and clears them out. Or so I believe.
I certainly have more energy and better overall QOL now than I did in January, even though now I am on meds.
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Hi zarovka,
What are those 10-12 tests that your oncologist prescribed ?
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This is a very minor concern in the scheme of things but just wondering if anyone has had had their face break out since starting Ibrance/Femara? I've noticed in the last couple of months my face is breaking out around my mouth and chin. It's not terrible but definitely not my normal complexion.
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AnimalC interestingly I saw it on my daughter too, i thought it's from this stuff.
Zark thanks for the input, I feel much better in supporting her wanting to do more.
Shetl how have you been? I know what you mean, about spending too much time, I also belong to tother threads, I feel I have to give my 2 cents for someone else also, if I could help with my experience how could I not. And we do learn so much here. It's a toss up with time, that's for sure.
Kaption sorry you are not feeling so well. As much as stayg at the highest dosage is desirable, there are choices, so maybe it's worth a try. Dani had to change due to ANC numbers, Onco did not wanna play too much with it, so they are still low, they do go to 0.5, but she is still holding on to that dosage, let's hope it continues.
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Hi Shetland and Kaption - just a heads up that I'm still losing hair. Sigh, trials indicate that happens to 22% of us. I started using halos on round #2 - here's the site for some of our newer ladies. http://halocouture.com/ They clip in and help me look normal at work, etc. I'm getting extra fatigued near end of round #5. Hoping to go to #100 if my onc agrees. Still on #125 +fas shots every 4 weeks. This combo is draining, but PET showed my lung/sternum is better. Still getting pleural effusions, so that means lung drained every 3-4 weeks. Best news - I am still at my job and except for false eyelashes and two naps (taken after lunch), not much difference. I am cruising to Spain/Portugal on July 27th. Stay positive, that is a great balance for many of us. Pam and Jobur you rock! I miss Naturegirl.
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Thanks, lalady. I remember you mentioning the halos and they look nice. I'm not sure I have enough hair in front. We have a wig store that works with cancer patients and I believe they have Hali's need to visit them
Good for you for working and staying active. I remember you mentioning that cruise. It sounds amazing. What ship is it? And what port does it leave from
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Letmywifelive -
Ooof. I will take you up on the challenge of walking through all the tests and what they are for, later. For now, I'll summarize at a high level. If you PM, I'll just send you the results.
The non-standard blood tests that he did were inflammation markers, vitamin deficiencies and infections. The main thing he found was that I had ripping urinary tract infection. Nothing is quite as dangerous as a major urinary tract infection while you are on drugs that pound your immune system. I had symptoms of the infection, but I was on a new drug with a list of side effects that could explain them and more.
No one else had thought to look. His protocol is to test every 8 weeks. After I got rid of the infection with a course of Cipro, half of my "side effects" from Ibrance were gone.
He also insisted on a baseline PET/CT and gave me an order to get one. The PET/CT showed a possible bone met that regular CT and a bone scan did not find. It also found a possible second primary cancer in my thyroid. We're just monitoring for now, but as I understand imaging technology more, that baseline scan is going to be essential for interpreting my progression or lack thereof going forward. It is not the protocol at my (big research) cancer center to do pet scans. I do think it is important.
I am confident his complementary protocol has substantially contributed to my progress so far. However, his testing and his perspective have proven game changing.
>Z<
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zarovka, did your insurance cover the additional PET/CT? My onc said insurance does not want to pay for PET unless CT gives a reason for it. May I also ask you how you found this onc that was willing to go more outside the box?
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Kaption - Halos can be cut with bangs - my fall has bangs to cover hair loss on top. I am flying LAX to Madrid (3 days), then catching Douro river on Uniworld cruise (7 days) to Lisbon (2 days). Excited - El Grecos in Prado museum! I hear the food and wine is wonderful, and since I am down 5 lbs thanks to Ibrance, I will have desert. Singlemom - I get PET scans quarterly and my insurance (Cigna PPO) pays for them. Also pays 100% for Ibrance. But there is a $10 copay program offered by Pfizer too. My onc feels PET scans are best indicators along with trends on TMs. Mine were down in April. Momall - rooting for you and Dani. Z - you are inspiring.
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Wonderful trip, lalady! Enjoy
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singlemom1 -
My insurance company (Aetna) did not blink at the first PET/CT Scan order from the complementary doc. When I talked with my regular onc about what the scan protocol should be going forward (given that I had just jumped the rails and gone around her protocols), she said that "insurance companies won't cover more than two PET Scans a year so you need to delay the next one until August."
In truth, insurance companies probably differ. I am going to have to learn what Aetna will allow. It is clear the hospital had its own scanning protocols that the oncologists are expected to follow and it is more conservative than the insurance.
My insurance company, in fact, has been pretty swell. I am not at all interested in sticking them with unnecessary tests. I feel my regular oncologists made a mistake not ordering a baseline pet/ct scan.. But not sure I need one more than every 6 months. Imaging schedule and type is something I am actively discussing and researching. I have some time. I could certainly live without that nasty contrast for a while.
A friend introduced me to the integrative medical doctor I ended up "marrying". But there are many. I would interview three nearby and pick the one that clicks with you. There is a great deal of communication and consistency among integrative practitioners and the protocols they follow. Integrative cancer care is mature. That said some of these folks are pretty kooky. The kooks can be useful, as long as you are comfortable giving a firm no to specific treatments that you don't want to pursue. Mine is not a homeopath or a naturopath. He is a allopathic medical doctor. He is not an oncologist, but there are trained oncologists who do integrative medicine both within research institutions and outside of them.
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Moissy, thank you for your input about the hair topper. I'm glad to know it is working for you. Lalady, I'm sorry to hear that your hair loss continues. The halo looks interesting. How long does your own hair have to be to pull over the halo? Can you put the halo hair up into a bun? How would you compare a topper to a halo? Your upcoming trip to Spain and Portugal sounds wonderful. I must confess that while I spent two happy days wandering the Prado a few years ago, I could not not bear to be in the El Greco room for very long!
Kaption, maybe they should check your blood counts at the end of your week off. Maybe, like mine, they are not actually recovering enough during your week off. But even if the counts are ok, it seems perfectly reasonable to improve your QOL with some time on a lower dose.
Hi, momall! I've been doing pretty well, thank you. Yes, I also feel that being here in case I can be helpful to someone else is important.
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Complementary Oncologist: Zarovka, if you are up to elaborating on your experience with the complimentary oncologist, I also am interested in learning more about how he has helped you, what tests he orders, how you found him, what his qualifications are, and whether insurance pays. I feel that I want to make sure I am doing everything I can to be healthy. In particular, I have been wondering if I am deficient in any nutrients, and whether I have much inflammation. Also, I sometimes wonder whether insurance and/or standard of care instructions might be unnecessarily limiting. I think about how when I was still Stage 1, my first onc, whom I did not like, did test my TMs regularly. My second onc did not test them--not standard for stage 1--so when the liver mets were finally diagnosed, they were too extensive for just a different hormone therapy, and I had to do chemo and lose my hair. I tried interviewing a naturopathic oncology guy, but I did not like him at all. I think I need this complementary person to be a medical doctor.
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Zar- what symptoms did you have for UTI? And how did the infection make Ibrance SE worse. I find this interesting.
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Shetlandpony, I was thinking the exact thing. I'll bring it up next time. Thanks
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Shetland Pony -
Traditional oncology is moving towards complementary oncology. This New York Times article talks about how they are systematically testing off label drugs on cancer. My complementary doctor prescribes a diabetes medication, metformin, for me off label. The same article talks about how cancer treatment is more like a jazz performance than rigid protocol. That's how the complementary practitioner does it, and I see my traditional oncologists stumbling towards this approach as well.
This NYT article talks about how the parents of a young buy pulled him off chemo just as he suffered a massive infection and the combination caused a normally incurable cancer to go into remission. Complementary medicine is all about protecting and promoting the immune system. The whole NYT series is basically talking about this transition.
It is becoming easier and easier to find medical doctors working outside the box. They still range from kooky to traditional. You have to take what you like and leave the rest. My complementary doc suggested apricots pits, but I can't get past the arsenic. I don't do it. The complementary docs tend to be very respectful of your instincts. He says "Hey I'm just the doctor" and he means it.
Many people like Dr. Lawenda. I am an avid reader of Dr. Lawenda, but wanted a doctor I can visit. Dr Lawenda maintains a list of integrative cancer centers on his site.Dr. Lawenda is close to the "establishment" but still takes a holistic approach.
Many doctors interested in thinking outside the box and holistically attend Dr. Weil's institute in Arizona. This website lists alumni of that institute. My doctor is one of them. The website shows their credentials and whether they have an MD. My doctor embraces treatments that are farther outside the mainstream then Dr. Lawenda. I don't know how he compares to the rest of the grads from Dr. Weil's institute, but if they bother to take that course, they are questioning the standard protocol.
No doctor knows everything. But if you get some good ideas, it can be game changing. We're navigating a complicated landscape.
Office visits, blood tests, prescription drugs (even off label) and scanning have been covered by my insurance. The supplementation and IV therapy is not. I did a course of IV therapy but opted out of the maintenance IVs. That said, the clearest outcomes have come from the part of the complementary care that insurance did cover. I believe firmly that the cancer cure that is right for you is within your financial means. Financial stress has killed more than one cancer patient. This does become an issue with complementary care. There is a whole separate discussion on this topic. But don't go to a complementary doctor if you can't say no to things you feel you don't need or cannot afford.
I talked about the key things my complementary doctor did in a previous post on this thread. I am still evaluating the impact of the supplementation and IV's. My gut is that they are contributing to my progress, but I'll never know. My onc said I am having a fast and strong response to Ibrance/letrozol. Does that meant the complementary program is working? Or does it mean I am responding really well to Letrozol and Ibrance? I am hedging my bets and following the complementary protocol.
I started a thread called Pablociclib 2016 where I outline my protocol, the side effects and the response. Basically talking to myself on that thread. I just try to be factual. I need to update it.
The testing is complicated. I will black out my name and personal information and send you the results if you PM me.
Lovesmaltese - my lymph nodes all over my body were throbbing and burning. The infection had gotten so bad it was systemic but no oncologist interpreted that symptom as infection. Also I had flu symptoms - exhaustion, headaches. To my oncologists, it was just another patient getting beaten up by a cancer drug. My complementary doctor has seen the SE of cancer drugs hide the symptoms of infection. My oncologists are exceptionally competent. However, in this complex space a second of eyes, preferably an outsider who questions the standard protocols, can be really helpful.
>Z<
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Hi all. I start Ibrance 125 on Wednesday. Do you take it at night? I am on faslodex right now and my markers started to increase so they are adding Ibrance. I noticed the conversation about hairloss. I have lost quite a bit of hair from doxil and faslodex. I am trying to stay alive and well through the summer. I have a 15 year old still at home. Any tips would be appreciated.
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Rose, I started off taking Ibrance at night, after dinner, but didn't seem to be sleeping well, so I switched to taking it earlier in the day -- after breakfast or lunch, whichever is the bigger meal -- and I not only sleep better, but the gastro issues (heartburn, gas, bloating) are much better.
As far as the hair loss, I've cut back to washing my hair only about once a week, and I use a biotin-enriched shampoo. Not sure how much either helps because I still have what I call daily "shedding," especially if I run my fingers through my hair. But it's a small price to pay for how well I feel on my current combo, which is Faslodex+Ibrance+Xgeva.
Hopefully the addition of Ibrance will kick Faslodex back into high gear for you!
Editing to add a PS about Z's comments above about Brian Lewanda, which I just saw, and whom I also follow. He's great, and Integrative Oncology also has a FB page. And Dr. Weil has some excellent CDs on self healing.
PPS ~ Here's an excellent article, especially for those new to the idea of integrative medicine. http://www.drweil.com/drw/u/ART03060/Treating-Canc...
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Rosevalley
I hope that Ibrance works for you. If it does, it's relatively easy to tolerate. We're all planning to be alive and well through the fall and beyond.
I take it between noon and five pm. Some research says that cancer is more active at night. If that is true, then you want your peak blood plasma concentration of Ibrance, which inhibits cell growth, at night. I think it takes 6-8 hours for Ibrance to reach peak concentration. That said, a good nights sleep is far more important than any other factor. You have to play with it. And you can play with it.
I am doing well with few side effects and no hair loss. The side effects kinda snowball until the stuff has maximally accumulated in your system on week three. I am in the middle of week 3 right now. I feel a little shaky and tired in the afternoon and that's about it. A good time to hang out on BCO. Don't plan any 10 mile hikes on week three.
However, I do walk when I feel sick and shaky and it does help. I believe the accumulation of the metabolites of all the stuff I am taking makes me sick. Walking moves the stuff through my system. Will head out in a bit and go for a walk later during my daughters soccer tryouts.
Welcome.
>Z<
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Welcome to Ibrance, Rosevalley. I hope it will give you the boost you need! I came off Doxil last year, and had lost a lot of hair but it's growing again on Ibrance. Yay! And I also take my Ibrance/Aromasin between 12-5pm because lunch is my biggest meal.
It looks like after 6 months on 125, my dose will be lowered because of neuropathy. It seems like I have a severe case and probably toughed it out a bit longer than I should have. Oh well, I'm stubborn that way. I just hope it's still working!
Wishing everyone the best, as always...
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Hi lovely Rose - per the Paloma study; 22% of us will suffer hair loss (as I and others have). You can get clip-ons as needed. Biggest baddie is fatigue/ neutropenia, and some mouth sores. Please check your blood counts carefully. I'm finishing round #5 Thursday at big bold #125. There are 3 strengths for your onc to consider; #125, #100, and #75. Please alert onc if SE's at #125 are too much - you have been through a lot.:) I take mine at dinner, but others prefer lunch or breakfast. Whatever meal you tolerate best should work. Let's get you through this summer and more! We are here for you.
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Yeah, Faith! Let's keep the Faith!
Cheers, you young thing, you!
Lauren
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Thank you all for the information. I take a bunch of pills in the morning so maybe lunch time for the Ibrance. The severe malnutrition I experienced along with the doxil in Dec and Jan made my hair thin. I brush or wash it and get gobs of hair. I pick off hair all day. How I am not bald amazes me. Anyway I was offered Ibrance a while ago and was afraid to do it with the pleurx drain I have for ascites. I was afraid of peritonitis. Then for a while I couldn't swallow pills. I can eat and swallow pills now. But I have nothing to lose by trying the Ibrance. It's this or check out. So I start tomorrow. I had mouth sores with Afinitor, diarrhea and edema, heart rate and BP issues with the Afinitor Aromasin combo. If the counts drop and my labs are wonky then I will drop down in dose. I have the 125mg to start. I meet the oncologist for labs and all the first week in June. The faslodex wears off and isn't keeping the cancer in check. So we have to add something else.
Well it's going to be be sunny and warm today. We have had weird weather here.. sunny and warm then flips back to cool cold and rainy. I had a turtle neck and sweatshirt on yesterday. Today will be tee shirt and capris weather. Flip flop. 77 degrees. Then by Thursday 59 and rainy again. Have a great day!
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Welcome to the Tribe Ibrance, Rosevalley. Many people do well on the lower doses. It really just depends how your body metabolizes the stuff. Any way it goes, we'll see you through flip flops and into snow boots.
>Z<
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