Ibrance (Palbociclib)
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Candy, great news! Glad you can stay on Ibrance
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Candy - I’m so happy for your news and that you will stay on Ibrance during this further investigation. Hoping and praying that’s just some scar tissue they are seeing on the CT
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Candy, that's great to hear. Hoping the tumor is dead as a doorknob on the PET and you get to stay on Ibrance for many more years.
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BLMike thank you so much for you thoughtful reply, I will take your words to heart and try to not be afraid of "saying the right things". I do not mean to imply the ladies on this thread are nitpicking, not at all. I guess what i meant to say is, I just know how sometimes, its the little things in life that can make or break getting through a day with this disease. I wouldn't want to be a wretch in someone's day for saying something stupid you know? Perhaps, this overanalysis of myself adds to my stress level, heck it might be part of my sleep problem, lol. My MO did mention maybe having to drop to 100mg possibly since my bone marrow is used to going through a workout as I am heavily pre-treated going into this and my marrow may not like the higher dose....will be getting 2 blood draws to check as I go through my 1st round - once on the 1st about 11 days in to see how its going and then on the 14th at the end of the cycle to see where I am at my lowest. The lowest I ever got on AC chemo was 400 on the neutrophils and it was like that almost everytime of the 4 cycles...with Taxol dose had to be reduced after 4th of 12th cycle cuz marrow wasn't happy...so this should be interesting! Your wife is very lucky and fortunate. I see husbands on here occasionally and I always love it, seeing a man advocate for his lady, trying to help lessen her burdens, its awesome. The position you are in, having to stand by and just watch helpless...I cannot imagine, i know if the situation was reversed and my husband was going through this, I'd don't know how I'd do it. I hate this for him, for you, and other spouses going through this, I see the agony in his eyes wanting so bad to take this away from me and he can't. BUT he's stuck by me, and that's one of my biggest encouragements, to still have his love.
Candy, that is wonderful news you get to stick to Ibrance! Woo hoo!
Side effects are minimal with Ibrance/Aromasin combo thus far, hotflashes a few times a day, husband will have our pellet stove going in one room, and I've escaped to the bedroom to blast a fan on me, I think I might like the winter this year! Hoping my bones agree tho, i remember when my mother broke both arms when I was a kid and had to have a plate of some kind put in to hold one of her her elbows together, she mentioned winter hurt her bones. I'm most worried about falling, MO says I am fracture risk right now....I almost asked her "Where?" but I said "Wait Wait, don't tell me, I'll freak out". Cycling on. World Series baseball on tv with hubby tonight, Taco eggs on the menu. I make scrambled eggs, melt alittle cheese on top, then top it with alittle taco meat, red onion, pico de gallo, scallions and a bit of romaine I shredd on top. Dollop of Chobani plain yogurt as sour cream, small drizzle of taco sauce ...Basically keto eggs...my way. Wonderful, filling with lots of fresh stuff raw stuff on top. Tonights going to be a good night
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About 16 months ago, my oncologist diagnosed my jaw pain as an infected saliva gland and prescribed an antibiotic. The pain came and went until about 6 weeks ago it came and stayed. Went to a dentist who diagnosed it as a side effect of Xgeva (been on injections over 6 years). He took an x-ray and showed me the dead bones in my jaw. Next step was to go to an oral surgeon who removed most (hopefully all) of the dead bone. This is the most painful experience of my life. I was tempted to ask my husband to hide the pistol. After a week I am seeing some improvement in the pain. I am hopeful I won't need the oral jaw operation again but I may. My oncologist was very specific about being care to only remove a little dead bone at a time.
The purpose of this post is to give those of you on Xgeva a heads up - this side effect is fairly common and extraordinarily painful. If any of you have had this experience and would like to share with me please do.
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Wandering. 6 yrs is a long time. I have heard that is not necessary but then drs do what they want, don't they? You didn't say the dose or frequency. Was it monthly the entire time? I've just gone from monthly for 2 yrs to quarterly. I'm not so sure its all that common. They tell you its 1% of patients but if you read the fine print it says 1% per year!. A bit of a difference. Perhaps they figure we won't be around long enough for it to be a problem.
GOOD LUCK
GAILMARY
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Help! This is odd. When I get the slightest overheated, no sweat involved, I get this awful pain on my arms and legs, like fire ants stinging or the tip of a knife jabbing at my skin, it’s awful. Thought it was heat rash, without the rash or hives. Last night I take a warm shower and the same pain. July was a year on Ibrance/Letrozole. My oncologist says ‘hmmm what a mystery’ which is no help. I read about small fiber neuropathy and the symptoms match. It’s not constant, seems to be heat reactive. Anyone else have this side effect?
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Thanks gailmary. I was on monthly xgeva injections for 2 to 3 years and then every 12 weeks for the rest of the time. (Not sure about the dosage.) I am a bit disappointed that my oncologist did not have a conversation with me about the side effect I am having. He seemed very familiar with the problem and has had patients with similar issues. Other than the jaw pain I feel great. Fingers crossed this will be resolved soon. Needless to say I will NEVER EVER have a tooth pulled AGAIN. No more xgeva shots either.
Other than the dead jaw bone the PET scan showed last week - the results were great.
We have members of our cancer support group who were diagnosed many years ago - up to 20 years ago - so waiting for us to die might be too optimistic for him instead of figuring out what to do. I'm not bitter about this but we should have been more aggressive.
Other than pain meds and following the oral surgeon's instructions the best help has been a heating pad. Nice that it's winter - heating pad feels great anyway.
Good night all. Ladies: thanks for letting me vent.
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Wow Wandering-that's really scary. Can't imagine the pain you must have endured. I have been on monthly Xgeva for 3 years-I have extensive bone mets so I thought it made sense. Others have theorized that Xgeva can prevent the cancer in the bones from spreading. It seems like it is dxxxed if you do, dxxxed if you don't. I'll have to bring this up at my next appointment. I did ask a few years ago but my MO was not inclined to have me switch to a less frequent injection schedule.
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I was on Xgeva monthly for six months, then onc switch me to Prolia (same drug, lower dose) every six months. She tries to get patients off the Xgeva as soon as possible, and my bone met was stable at the 6-month point.
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I've developed a clicking jaw when I chew. I've had this on occasion before, but now it's persistent. I hope it's not the Xgeva! Another question to bring up at my next visit.
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wandering,
Did the problem start because you had a tooth pulled? Do you mind me asking what type of jaw pain you had? Was it achy or sharp?
How did they determine if was dead bone? With an xray? Reason I'm asking all these questions is I have been having issues with my upper jaw by my bridge. The dentist took an xray and didn't see anything and chalked it up to sinus issues.
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This is one of my concerns, ONJ with Xgeva or Zometa, I am currently on monthly about to get my 3rd tomorrow, after a year my MO mentioned we could go to every 3 months...i feel like this such a hard place to be concerning this medication...try and prevent fracture and protect the bones or have a small risk of ONJ to contend with. I fear this honestly, the side effect of ONJ, which is why I was glad my MO said every 3 months after a year was an option. I have seen many women on a couple support groups I am on have this side effect (ONJ), more than I am comfortable with....Ugh, another thing to add to the worry bank it seems....I really feel like crap on Zometa for several days afterwards, I mentioned this to MO, but she wants me to try and push through it for now as I am fracture risk.
I am about to get my 1st blood draw on Ibrance after 11 days on tomorrow morning...anyone else checked a few times early on like this, were your counts already wanting to go low at this point or was that only more seen at the end of the cycle?
Cycling on
Nicole, thinking of you girl, nothing but good thoughts/results are hoped for you and are being sent your way and a good plan moving forward
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RadagastRabbit, getting a blood draw every two weeks at the start of Ibrance is the normal procedure to just be cautious.
Wandering, I have been on Zometa every three months from the start with no jaw issues after three plus years. I am very careful with dental hygiene and had a wisdom tooth pulled (my last one) before I even started the Ibrance, but I understand your concern. I also take Claritin the day before, during and the day after my infusion. It was suggested this would help and apparently it does for me. I sometimes feel a little achy the day after but it is very tolerable. I am not a doctor so am unsure why some get Zometa and some Xgeva but I thought it had to do with your menopause situation (I had a hysterectomy at age 35.) Maybe someone else here is more an expert. I have asked about getting off the Zometa and my onc said we can discuss it at our next apt in Nov after my next scan.
Candy, yay for your great news!
Lauren, praying for right decisions going ahead.
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I just finished my first cycle of Ibrance and third injection of Faslodex. On my second week, I started to develop painful sores in my mouth. As I understand it, this common, but does it get better? On my second medication to try to get rid of them. Also does anyone experience headaches? This time of year, I tend to get sinus headaches and they feel similar, but I don't have the nasal congestion with it and over the counter pain relievers do not help much. I hate complaining because I know it could be worse, but just want to know what to expect. My MO wants to see if he can just manage my symptoms without changing anything just yet. Also, sometimes I get this overwhelming feelings of mixed emotions anger/low patience. The nurse practioner said this is probobably the Faslodex talking. Anyone else? Some days, I just want to go one day and feel normal again.
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hi kareng1227 If you go to page 627 [ish] on this thread, there were quite a lot of suggestions of what can help with mouth sores. I can remember magic mouthwash and dexamethasone were mentioned and are available from your medic. I get mouth sores every month. Good oral hygiene, drinking lots of water, and using mouthwash after every meal has helped me. The sores go on the week off Ibrance. I hope you find some relief soon.
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Hi Karen,
I have been struggling with painful mouth sores since my 1st cycle. I tried quite a few things and my MO prescribed dexamethasone oral solution. I swish twice a day even if I don't have sores. I love it, I haven't had any mouth sores since I started 2 months ago.
I don't have problems with headaches, just sinus issues.
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Hi, Karen,
As Denny said, there were lots and lots of suggestions for mouth sores. I am just finishing up my 4th cycle of Ibrance. I haven't had them yet, but I've felt like they were about to pop -- lots of gum pain, etc. I've been using a salt rinse as much as I can (when I remember) and also eating yogurt almost every day. That was one of the suggestions -- most people said Greek yogurt, but I mostly use Active. It seems to have helped.
As to the anger issues, I've had those as well -- but sometimes I think it's just because I feel that I'm dealing with something pretty dramatic in my life and I don't want to put up with anyone's BS, if you get my drift. But I guess it could be the faslodex.
Bev
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Thanks Rabbit...less than a week from today i will have the results I am wanting them.
Well I was the one with HORRIBLE mouth sores..they were one of the most painful things I have ever dealt with...it might not have been so bad if they wouldn't have lasted so long..but they did... I couldn't get the magic mouthwash it was $600.00 but the dexamethasone works but use it every day after every meal even if you don't have a sore...im told that helps prevent them.
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The ads for Verzenio have been running here for some time. I pulled it up on the internet - surprise surprise - the cost is within a few hundred dollars the same as Ibrance.
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Westiemom-
I also get what I have described as a "stinging nettles" sensation on my upper outer arms and tops of my thighs for no seeming reason, although it is definitely triggered by heat-- it also sometimes seems to just happen even if I am not hot. It just started a few weeks ago, around the time I began a new clinical trial with an investigational oral SERD and palbo. It is my second go-round with palbo-- I was on it for more than three years, until I had significant progression about 15 months ago. But the trial allows for one prior CDK4/6i in the arm that I am in, which combines the SERD (it's a ramped-up, oral version of fulvestrant) with palbo. I was thinking it was the SERD, since I never had a similar sensation the years I was previously on palbo, but perhaps I am more sensitive to it now.
I'll ask the trial coordinator if anyone else is noticing this effect. I go up for a trial visit next week. I'll report back if I learn anything.
Hope we can get a handle on it-- and I hope it's not a neuropathy starting. I already have a mild version of tingling (but not stinging like this is) in my toes from Xeloda. Sheesh. As if cancer itself isn't enough.
Elizabeth
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Nicole, anyone charging you $600 for Magic Mouthwash should be arrested. It's simply a combination of liquid Benadryl, Maalox, and Lidocaine Viscous. When we had a pharmacy, we charged no more than $30 for an 8-ounce bottle... you should call around to get a better price!
Or... make your own. Get a prescription for the Lidocaine (should be under $20), and buy some liquid Benadryll and Maalox. Mix equal parts of the three, shake like crazy. Here is more info:
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Thanks Ciaci, I can give this recipe to my my oncology pharmacist here in England. She looked at me blankly when I mentioned Magic Mouthwash before! If she cannot help I will be mixing it myself . \o/
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Magic mouth wash cost me 40$ Only had mouth sores once in Sept.and can you believe!!! my Ibrance costs me only $5.00 per month!! TY Ciaci for recipe..
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Westiemom - I get the same side effects. It feels like a knife in the leg. I’ve had it in my thigh and in the muscle next to my shin bone. I used to have them everyday, but don’t get them as much now (on cycle #75 of I/L). I rub Deep Blue oil, or something similar, and it helps.
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kareng1227 - Headaches with Ibrance, maybe. I just finished the first 21 days and am on day 5 of no Ibrance. During the time off from Ibrance I experienced 2-3 days of dull headaches that felt like dehydration headaches. I'm drinking so much water I might as well take up residence on the toilet, it is not dehydration. But I'm not sure what it is. I had also started drinking green tea at an NDs recommendation, and I came down with a bad cold during that same time as the headaches. Today, no headache. Cold is getting better, and I did have 2 cups of green tea today. Fatigue is the only thing I notice, and I started experiencing that before the cold. Also, way too much hair loss in the comb. Anyone have ideas for hair loss? I did cold capping with chemo 2 1/2 years ago, saved 30-40%.
Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimadex and Ibrance prescribed to shrink tumor prior to surgery
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I’ve had to take an extra week off Ibrance, so two weeks total. I have to say I’ve had a daily headache for over a week. I can’t tell you why. I haven’t been sick. I will keep an eye when I go back on to see if they go away. I will hopefully get to start back on them tomorrow. I haven’t looked to see if others get headaches on their off week.
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KBL, I occasionally get a dull headache, but not always. There does not seem to be a pattern for me.
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I have never been a headache person. But on this medication regiment (Ibrance letrozole Lupron and xygeva) I do get many headaches.
I don’t know what to blame but when I first starting getting the Lupron injections, I would develop a strong headache that almost made it difficult to focus my eyes. It would last almost a week. Tylenol and Advil wouldn’t touch them. that lasted about the first 6-8 months on this treatment.
Now I occasionally get a dull headache (nothing like the Lupron headaches) and once in a while I will take Tylenol and/or take a rest in bed, or on the sofa and make sure to eat some nourishing food and drink water.
I think I must’ve used to REALLY push myself very hard. I say this because now when I try to push myself in the same way, when I start to overdo it, my body starts screaming at me. In the past, I think I just ignored the signals...they didn’t scream as loud.
It’s a weird thing to try to explain, but I am way more sensitive now than I’ve ever been before in my life
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Hello all - After 2 years on iBrance/faslodex and being nead, I have new tumors throughout my lower spine and pelvis. I had a blood test for the Piqray mutation and found out I don’t have that one but have a different one that is more common in melanoma cancers. So I may be going to a clinical trial next getting drugs that have been successful for melanoma patients with the same mutation I have enjoyed you wonderful ladies on this thread! I don’t post much but have followed along over the past two years. I am very thankful to have been on iBrance with such a good QOL. Praying for similar results in the next treatment. Hugs to you all!
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