Ibrance (Palbociclib)
Comments
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There are a number of ladies in Manitoba on Kisquali, who are getting it as part of a clinical trial. My wife's onc told us that. She said there are more on kisquali, than ibrance because of the availability through a clinical trial. I really hope Sadie can be considered grandfathered into the access to ibrance, having been on it previously.
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hi friends
Just had a call with the pharmacy and the told me that my insurance company will no cover the Ibrance that manulife does not concider this drug regardless of which company I work for. So I guess there goes my chance.
Anyway just wanted to let you all know some insurance companies do cover it and some don't
My hope now relies on the Letrozole and Goserilin.
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Enerva: you could see if you qualify for the trial mentioned above in Manitoba. Kisquali is very similar to Ibrance. Call the Manitoba Cancer Agency in Winnipeg. In addition there is a clinical trial running out of the Cross Cancer Institute in Edmonton, using Ibrance. The principal investigator is Dr Anil Joy. I don’t know if they still enrolling patients, but you can contact them too. Many women do well on letrozole too
Jo
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New side effect for me, just noticed it in the last day or two: super dry fingertips. They're so rough, almost like sandpaper. I crochet, and it's been horrible - the yarn snags on my fingertips! Mostly thumbs, but fore- and middle fingers as well. I drink close to a gallon of water a day, so I'm definitely hydrating. Now I'm also slathering on hand lotion, which I actively hate. Does anyone else have this, and is it from the Ibrance or Letrozole, I wonder. Don't have dry skin anywhere else, weirdly enough...
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hi ciaci I believe is the letrozole cuz I have the same issue but I have my entire hands more to the fingertips but my hands I thought it was just winter but now that you mention it must be the medication since I have been on it for a week now. And this started a few days ago.
Thanks for sharing
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hello everyone,
When is the best period to do TM labs?
1.Is it the last day of the 3 weeks or after the 4th?
2.My mother has lots of WBC and RBC ups and downs with Ibrance. According to Ibrance trials before you move from the 100mg to 75mg you should try 2 weeks on and two weeks of on the 100mg. My question is why 2 weeks on 100mg is better than 3 weeks on 75mg, given that If you add up the mg with the 75 you take more substance
Thanks in advance
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I was told, by several people, the chances of getting sick from low counts were very small. I’ve been going 4 months and have been doing good, knock on wood. Why is that? If we are legitimately imunocomprised then why do they tell me it’s okay to go out and be around crowds? Is this just another thing the doctors downplay? Like “oh, you might be a little tired.” I know others are sick and I have two boys who are covered in all kinds of funk. Just curious if anyone knew
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I caught a cold or something a week or so ago, and our visiting nurse said to see the Dr before the holiday shut down, so I did, and he actually did give me an antibiotic considering the risks - and I'm glad he did, since it started going down, and well, I'll spare you the details ! In any case, I am delighted that my Doctor was willing to be so proactive !
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Amarantha, my onc says to go to the Dr when I get sick like you said, and I usually do. This time I didn't (I came down with a cold on Thursday) as I haven't experienced any se like sinusitis or ear ache like before. I still have cough medicine from the last time so I am taking that, but if it doesn't let up by Tuesday I will go in. My whole family is sick (DD, DH, and DGD). I may be sorry I waited...
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ok just took my first Ibrance!! Scared half to death! The taste is horrendous!!!! Took with yogurt (fat free) and half a peanut butter sandwich, hopefully that’s enough fat!
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Gracie, I'm over here praying that Ibrance is the perfect drug for you! Happy New Year! My extensive bone mets are down to nothing 15 cycles in. XGeva and Arimidex are my sister drugs.
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Thanks, Pat G. I'm also doing Xgeva but Faslodex. Femera failed me! Worried about this terrible bitter taste. It's probably just off the outside of the capsule, but it's horrible.
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Gracie, I never tasted anything at all on the Ibrance, what on earth did you do, chew it ?
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Oh good grief...why would anyone think I was stupid enough to chew it!!!! THanks for the support!
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Forget I even asked!
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LOL Gracie, that was meant as a joke, the point being, such an experience is I hope ENTIRELY an anomaly and should never happen again ! yuck !0 -
Gracie, I have never noticed a bad tast from Ibrance, but I have to admit that I am paranoid that it might get stuck in my throat, so I drink an entire glass of water with it. There are a few people here who have reported burping up a puff of brown smoke (I think it's brown). I kid you not, and it is apparently a known "thing". I would think that those people might have that terrible taste you described along with that puff of smoke. Maybe one of them will chime in. I think that my taste buds aren't as sensitive as they once were, so maybe the medication is easier for me to take. I hope it doesn't continue to taste so horrible for you in the future.
Lynn
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Thanks so much Lynn! I hope it was just a fluke and it doesn't continue to taste so bad. I can still taste it and its been a while now. Thankfully I didn't burp any smoke or I would have really freaked out
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I've never had the remotest taste from the ibrance. I have, however, had the "puff of smoke" three times. It is white. I've never experienced a taste from that, either, as I immediately gulped down a lot of water.
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Gracie, here's what I was thinking about the taste thing. Maybe you should look through the rest of the capsules in the bottle and see if any are broken or coming apart at the "seam." I've never tasted anything when taking Ibrance. Look for powder on any of the other capsules or in the bottle. Maybe wipe it off? Hopefully, it is not much. I have no suggestion if you do find any broken but to call the specialty pharmacy and that seems like a lot of hassle. The whole sending back and getting them replaced, etc. They do need to know if the pills are coming apart or maybe breaking during shipping. UPS and FedEx were all crazy during the holidays. Maybe packages got thrown around more than usual, if that is even possible. Just my idea about the taste issue you had.
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Jaycee, I did look. Saw no broken capsules. But my mouth is really sore already today which I would think is really early. Will call onc. tomorrow
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Hello lovely ladies - I'm a newbie here - I'll start taking Ibrance on the 10th... good to know all these snippets of info from the 'experienced ones'... honestly, it's great :-) Sending positive vibes to you all for 2018 xx
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Welcome JoT! I've been on Ibrance since April 2015 and stable! Many of us are doing well. I always tell newbies that they will learn more here then any doctor could ever tell you. Lots of great ladies , tips and advice!
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my Inc said even though counts go down they have never seen anyone get an infection, which he thought was strange.
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Lynnwood does the ibrance fatigue level off
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Schoolmom- It leveled off for me. I'm on 75 mg two weeks on and two weeks off. I do sleep longer at night these days. Cycle 28
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i am on cycle 31. I went down to 100mg a few months after starting due to fatigue. That helped quite a bit. And I do think my fatigue has improved overall. I still occasionally do what I call a ‘super sleep’, but much less often.
Wishing you (and everyone!) success on Ibrance.
Kitty
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Thanks. I'm just into round 2 but doing back radiation and steroids. Going to go back to work in Middle March so hoping to be less tired by then...
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Schoolmom, the fatigue has leveled off. My fatigue seems to come and go in stretches of time, might have a few weeks where it good then a few where I'm exhausted. I can't seem to find a pattern to it. I'm lucky that I can rest when it hits since I gave up my job last June.
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Hallo everybody! After reading this blog for some weeks now, I just created myself an account in order to also write postings.
I have been diagnosed with de novo stage IV end of August 2017, when having an MRI due to thorax back pain. I can be grateful the the radiologist did not only check the disks but also saw the lesions in my spine and the enlarged axillary node and set off the whole diagnosis tooling.
The de novo stage IV diagnosis (various bone mets in my whole spine and my sculp bone, but no current fracture risk) was a great shock to me, because I was only 40 (now 41) at this point of time, having kids that just turned 5 and 7 years. I can live with the knowledge of not becoming 100, but it is hard for me that I might not be able to guide my kids until becoming 18, high school graduation, college, marriage... .
Since my breast cancer is highly estrogen positive, I have been put on Leuproreline (similar to Gosereline, because I am pre-menopausal), Letrozole and Ibrance. For my bone mets, I receive Zometa 4-weekly. It was a bit of a scare that the CA15-3 (and CEA) marker went up from 38 at diagnosis to 150 after 2 months of treatment. However, CT and MRI scans of liver/lungs were clear. Therefore, my MO and I tend to hope that we saw a tumour flare, especially since the volume of the breast lump decreased by about 40% during the first 2 months of treatment and initial sclerosing of the bone mets could be observed. I will have the tumour markers done again on thursday, please keep your fingers crossed, that we will see a decrease now to prove the tumour flare theory.
I am trying to stay optimistic and tell myself that my goal is to see my kids turn 18 and get their high school diploma. I am doing back strengthening workouts to support my spine and even got myself an indoor rower, however, my old binge-eating-disorder has overwhelmed me again after diagnosis, which had me put on 25 pounds in 4 months, which certainly does not help my back. I am currently checking for getting psychological support for this issue.
What is really driving me crazy is the fact, that I feel pain every day in a different part of my body. One day, my breast feels like being stabbed with a knitting needle or it is itching (I did not get surgery since being de novo stage IV). Then my axillary nodes hurt, the next day, I have pain in different parts of my back or in my ribs or in the area between my right ribs and my bellybutton (liver area). And lately, I am having a weird sensation in the skin of my head. I have no idea, whether the pain results from the disease or the medication, but I fear for the worst every time again. I do not yet know how to calm down on this.
Otherwise, I am ok with the treatment. I feel fatique from Ibrance starting mid week 2 until end week 3, but my WBC are quite ok at 125 mg dose. Unfortunately, I had 2 bacterial infections in my nose during my current 4th cycle, which needed 2 different antibiotics (the 2nd infection was resistant against the 1st antibiotic). It is not easy to stay away from germs with 2 small kids, and I also do not want to be stuck at home not being able to see my friends or go shopping. And of course, I do hate the hormone depletion side effects, especially the sweating and the sleeping problems. However, I guess that is still much better than any other treatments, right? And I hope that my body will eventually get used to the induced menopause at some point of time.
Did anyone of you younger folks get oophorectomy to get off the Leuproreline/Gosereline? Does it make sense? How bad does one feel after the surgery? How long does it take to recover?
Sorry for the looong post. By the way, in case you wonder about my weird English: this is not my mother tongue, since I am from Germany. However, this forum is so much more active than any German breast cancer forum and the experience with Ibrance is much greater in the US, since Ibrance has been on the German market only since 11/2016. So I can get so much more support and information from you guys.
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