Ibrance (Palbociclib)
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Grannax2, to post a pic, click the little icon with the two mountains on it in the row of icons on top of the text window where you type a post. It is the 8th icon from the left. It will let you choose a pic from your computer if you are using that or your phone if you are using that. Try it. What could go wrong?
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Hi everyone. I will be starting Ibrance after I finish radio after a recent bone met diagnosis (initial diagnosis of breast cancer in 2009). And I'm super scared of possible side effects (wrote a thread and was directed here by a kind member/mod), especially nausea, hair loss, malaise, pain or anything like that. Part of my worry comes from the fact that the other drugs I will be taking also cause these side effects, especially zoledronic acid which sounds quite aggresive (femara/letrozole is the other medication I will be taking but I took anastrazole for 5 years with no major issues so I worry less about this because they're similar or so I hope although my dose will be higher from 1mg arimidex to 2.5mg femara).
I wonder if anyone has actually vomited because of ibrance and/or ibrance+ zoledronic acid or how common it is or is expected to be.
How much has your quality of life really changed?
Also, I'm a doctor, I wonder if you can continue working in such a contaminated environment.
I'm also confused as to how the low in blood white cell count doesn't contribute to cancer which seems to be regulated by the inmune system at least to some extent.
Thanks a million for existing and surviving.
Sorry if my english is not great, it's not my native language.
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Grannax, I only know one way to do it and that's on a MAC. I click on the photo and drag it down into the left bottom corner. Then I get on here, click on it and drag into the comments. Good luck!
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Pat, thank you for that laugh out loud moment.
I have had a flu shot for many years first because I was caretaker for my elderly mother and handicapped brother. Since I had my first bc diagnosis I have never missed since I have an immune disorder. I did get the flu 2 times but very mild cases. In my 20s and 30s I had the flu and ended up with pneumonia .
I've had shingles but they don't want me to have shingles shot
Nonahope I had a bone marrow biopsy during my hospitalizations with my first 3 ACs. I won't kid you it hurt. But it was only a short time. I never noticed much pain after the fact. I didn't have sedation but that may be a great idea Pat.
As a result they found an underlying problem with my bone marrow and immune response. I probably had it most of my life. They stopped AC and that was 12 years ago. And I just started Ibrance this year. Doing 75 mg because if this. I am lucky to have the same mo I had then.
I think a bone biopsy is to take a sample of mets cells so that would be done under surgical conditions. The area for bone marrow biopsy is a big old bone and they don't have to be so precise. I hope it goes well for you.
Intolight I hope you are enjoying you trip. Wicked is a great musical. I'd like to see it again. Come from away is a great uplifting one I saw this past year.
My hip is better now that the humidity let up. Who knows 🙃
Maire
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Ha! Just following the instructions about how to post a pic!
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Ceci, Welcome to the Ibrance thread. I am sorry that you have bone mets, but the people here will provide you with the knowledge and support you need. I was reluctant to start Ibrance. I had read about all the Side effects, and they sounded terrible. I thought I would feel sickly and would be so susceptible to germs that I would catch every disease known to man. I told my DH that I would try it, and I have been pleasantly surprised. The most common side effects reported here have been low blood counts, fatigue, and aches and pains. Some nausea has been reported, but it doesn't seem to be prolonged or severe. The aches and pains seem to be from leterozole, not Ibrance. If blood counts get too low, a reduced dosage of Ibrance usually resolves the issue. Most of us have not experienced increased illnesses or infections, in spite of low WBC and neutrophil counts. Fatigue also seems to be reduced a bit by a lowered dose of Ibrance, and exercise also helps. No one here has suffered a significant loss of hair although some hair thinning is not uncommon. Most of us continue to lead normal lives. People continue to work, raise families, travel, etc. I have been on Ibrance, Faslodex, and Zometa for more than I year. I feel great and have experienced significant reduction in liver mets and improvement in bone mets. My SEs? Very low WBC, neutrophil count, and platelets in cycle one, so changed from 125 mg of Ibrance down to 100 mg. since that time, my counts have been low, but they do rebound to acceptable levels. The fatigue I had in cycle one is gone. I have some thinning of hair, but it is minor and not noticeable. (Loss of strands of hair, not clumps of it.) I had itchy hands twice, tingly scalp during some cycles, mouth sores twice, nose bleeds only during cycle one. I do seem to bruise more easily, but my platelets are not dangerously low. That's about it. I consider myself fortunate. Now, the Zometa, zoledronic acid. Some people have flu-like symptoms for a few days, especially after the first treatment. Here are recommendations: make sure the IV is set to take at least 30 minutes not 15 minutes as some nurses want to do. That is very important. Ask the nurse and make sure it is set for at least 30 minutes. Stay well-hydrated the day before, the day of, and the day following infusion. Take Advil or Tylenol day of and following infusion, some people also take Claritin. Let us know how you are doing. By the way, your English is excellent.
Hugs and prayers from, Lynne
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Ceci, welcome to our little corner of the world. I'm sorry you must do this but glad you have found a drug that can work so amazingly against MBC. I retired before I started this protocol but there are many here who continue to work.
May I suggest that you ask for 100mg Ibrance? My oncologist never gives the higher dose and all his patients have done well. Most doctors start people at 125mg because that was used in the trials. Data is showing that 100mg works just as well.
I take 100mg + Arimidex + XGeva. I also have added Turmeric. Having taken Femara in the past and experiencing pain in several tendons/joints, I chose the Turmeric to, hopefully, avoid that. I've completed 14 Ibrance/Arimidex cycles and, so far, I have none of that discomfort.
This has been an extremely successful treatment for my widespread bone mets. A PET/CT showed a remarkable response at 3 months, down from an FDG of 11 to 2.9. After 9 cycles I had only 2 remaining spots with any FDG and they were at 2.3. I have chosen to also see an orthopedic oncologist and his x-rays show that my largest bone lesions are just dead tissue. Needless to say, I'm delighted! I've met many on Ibrance who no longer have any evidence of disease and others who have stopped the disease from progressing for a long time. My oncologist met a fellow doctor with a patient who was in the trials and still has no disease progression!
Fatigue is my most persistent side effect.There seems to be no rhyme or reason for which days it is most prevalent. Nausea is an SE that pops in and out. I've found that taking one-fourth of a Pherergen (sp?) fixes that. I might throw up once or twice a week. Plain crackers help. I had mouth sores in the beginning. Natural Greek yogurt was an almost instant cure. I chose Stonyfield as it was readily available here and tasted good. For 6 months I had a mild itchy rash on my lower legs but one day it was just gone with no treatment. Even though I eat less, I have gained weight which I know is caused by the Arimidex + inactivity. My counts have stayed within or just below normal ranges except for one cycle.
I hope this is helpful, Ceci. I wish you well on this journey and know you will find comfort here. We think of ourselves as pioneers showing the way for future people with MBC. Lots of us expect to grow old and die from nothing one day when we're about 100! God bless you.
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Welcome Cici.
I’m sorry you find yourself here but you will find amazing support. My MO and I currently hit pause on Ibrance as my red blood cells were not recovering. As a result I was becoming increasingly anemic (this was at 100 mg). I work full time and have not found infection on Ibrance a problem. I understand that the trials demonstrated that the low neutrophils did not translate to more infections. I did not have any hair loss, no vomiting and no nausea. There was definite fatigue at the end of the cycle and the recovery week. You might need to plan for this by lightening your load.
I am mo expert on immunology so will leave this response to others. By the way, your English is superb. Where are you from? I spent quite some time working in Brazil and your user name brings back memories.
Pat (2)
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Cure-ious, you are the woman!!! And I love the quilt. Please tell me you made this! My friend with a fabric shop is having a vintage sewing machine show this week-end and I can't wait to send your pic to her! I'll have this painting in that show:
Thanks for the fun!
"I Can't Change the World but I Can Help You Make That Hat" 24" x 24' Mixed Media on Canvas:
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Pat- Oh, I WISH I had made that!! No idea who the fabulous artist was, but I love art quilts and the one you posted rocks too!!
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Ooh, that's a painting, and YOU made it?! Wonderful- kind of a rube goldberg machine idea!!
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I know this particular drug is not approved for breast cancer but I thought it explained fairly simply how this type therapy works. I know there are doubters out there but remember the woman we talked about a few days back who has no (zero...none!) cancer after getting immunotherapy 2 years ago. She's on Facebook and is away on a boat paddling trip....HEALTHY!
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Ha! Cure-ious, the art reviewer for our newspaper also used Rube Goldberg when talking about my work. This is a mix of acrylic paint and collage but it would make a good art quilt. I just don't have the patience for that, I'm afraid!
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Hi everyone.. I'm currently on my 3rd round of ibrance. So far, the only side effects that have emerged are fatigue and hair thinning.
For those who have had hair thinning.. have you found any product that helps? My hair was thin to begin with and now it's really, really thin (almost bald) at the crown of my head. I'm desperately looking for options to regrow hair in that area.
Any thoughts/ suggestions?
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PatgMc thank you for remembering us “lurkers” I read all the posts but I don’t have enough to share. My experience with Abraxane is boring as hardly any side effects. As long as it works it’s ok. Sending good vibes to all.
Aurora
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Aurora, I've had so many friends taking Abraxane with great success. I love that company as they paid for more than a thousand copies of our Support to Go Unbooks several years ago. We were able to give them away and that was fun! I'm glad you're doing so well and happy to meet you!
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Aurora, it is so good to hear from you. I must add that "boring" can be a wonderful word! I am glad that it is working and that you have few SEs. I hope that keeps up for a very long time.
Pat(1), That picture is gorgeous! You are one talented woman! Thank you for sharing.
Hugs and prayers, Lynne
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Pat, amazing artwork, as always! I REMEMBER that sewing machine! It was in a little table/cabinet and it flipped up from below! And it had a treadle thing to work it. Sounds as though I should also remember the Model T, but that's a ways back.....
Grannax, take a look:
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Good morning...
Welcome Ceci...I will just add that the side effects are pretty much like everyone says. I never had any vomiting, though. Nausea only with the first round. The Zometa was another story. It raised my creatinine level to the point I had to have daily fluid infusions for a couple of weeks. I've only had one infusion of Zometa -- nothing since then. I am just finishing up my 4th round of Ibrance 125mg./Letrozole. My fatigue has subsided since the first couple rounds. I hope you do well, like most of the gals on this site.
Finallyoverit....I, too, have the hair thinning. I have very fine hair, so it's pretty annoying. I don't use any special shampoo -- just the "thickening" kind. And, of course, mousse is my best friend. I haven't colored my hair since my diagnosis, but I'm about to give in and hope my hair doesn't end up on the floor!!
PatG...Love your painting! I have my grandma's old Singer peddle machine! It folds into a cabinet and I use it just for décor, but it still sews beautifully. My grandma would be 117 years old, so that machine is quite old!!
Maire...I'm sure my onco will numb the area for the bone marrow biopsy....he better!!!!
Wishing all a very good day!
Hope
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Hope, I have not colored by hair since my MBC dx. My hair has thinned, but not drastically. The nurses at my cancer center recommended baby shampoo, so I have been using that, but I really don't think that it makes much of a difference. Anyway, back to the color.. I now have streaks of gray throughout my hair and am trying to decide whether or not to start coloring again. There are two things holding me back. 1. I know that once I start I will have to continue or my head will begin to look like a skunk as the gray roots appear. 2. I don't want my hair to break off and fall out from the chemicals. I really don't think that will happen since lots of people continue to color their hair while going through this treatment. I guess I have to decide how much the gray really bothers me. Hmmmm, if only that were my biggest worry! Lol. Let me know what you decide to do. I am leaving for Hawaii in 13 days, and I just might take the plunge before I go.
Hugs and prayers from, Lynne
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Hope, I finally gave in after waiting 18 months and colored my hair again. I am glad I did although it is still thinning...not more than before though.
All of you pictures are great. I have had to stop crocheting while at my sons as he has 3 cats (rescues) and I can't keep them away from the yarn! Going to Woodstock tomorrow...resting today.
Keeping you all in my prayers.
Chris
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Thank you Joynert, ill give it a try.
I will start month #10 tomorrow ( because of my first 2 week delay). Thanks to all of you, I know the break won make any difference in the long run.
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Welcome Ceci. Always find great I support and information here.
Nonahope I'm sure he will numb the area.
Pat G. Great painting.. Cureious, that quilt speaks to me. I love to knit and expect they will find me someday looking like that seamstress with a million skeins if wool as I try to use up my stash. Tomorrow mo appt and Faslodex. No Xgeva this time. Then off to play with my grands. Hug therapy is my favorite. Have a good weekend. Looks like beauty here in NJ. Maire
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finally over it- the hair thinning usually comes from the aromatase inhibitor if you are on one ( letrozole, arimidex etc) due to the conversion of estrogen to androgen so you have a male pattern baldness- top and temples often. I have heard that rogaine ( minoxidil) can help. Mine got better when I stopped the arimidex and changed to faslodex. You have to keep using the rogaine
I color my hair with a non permanent dye every 4-6 weeks. I feel much better with the color. I also color the eyebrows at the same time.
Love the quilt and the painting. The machine brings back memories. My singer featherweight is 51 years old, but not as pretty. Works perfectly still.
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Hi all
I take Ibrance & Faslodex . I have left hip pain internally if that makes sense. I also have a tumor in that area but the pain before the Ibrance was definitely different and the tumor has shrunk.
Tanya
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Lynne...I did call and make an appointment, but just for a haircut. I decided I would leave the hair color decision up to my hairdresser when she sees me. Then, I will schedule an appointment while I'm there. I didn't want to schedule such a long appointment, only to have her say "no" to the color.
You're upcoming trip to Hawaii sounds wonderful!!!NKB...What do you consider a non-permanent dye? How long does it last?
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nonahope- I am a natural red head so I don’t know if that changes things. It has no peroxide which is the harsh stuff. It fades with time so root don’t show as much. I thought it was less of a commitment years ago. Ask your hairdresser what she/he thinks is best for you.
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nonahope I use the same type of hair color as nkb. The peroxide was hurrying my eyes and making my scalp itch. I've only done it once. It's much more subtle. But, it doesn't bother me at all. My white hair shows through. I don't mind that. It covers the dark grey which is what I really don't like.
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nonahope, my hairdresser uses a hair color with no ammonia. She will know what you need usually. It fades faster but does brighten and adds to my color. I find I can go longer between colors as the fading Is not so obvious or harsh at the hairline. My natural color is a salt n pepper so not grey all over as I was hoping. I feel better and younger-looking with it colored. I still wear a wig when dressing up fancy. I will send a picture later.
Chris
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