Warning on ibrance box.

[Beryl71]

For the first time my ibrance box has a warning about handling it with care. When I looked up ' cytoxic agent'it all sounded a bit scary.

[Ardie1970]

My pharmacist went through a whole list of protocols for handling Ibrance, like washing your hands before and after taking, If you have an “accident” wash your clothes separately from everyone else. I feel like a toxic waste dump walking around! 😜

[Beryl71 in reply to Ardie1970]

Noone mentioned any of this to me when I was started on the meds. I feel like I must be glowing in the dark!

[Lokilinda in reply to Beryl71]

When I first was prepping to start ibrance I had to sign a waiver at the clinic that had all the possible side effects and they had been explained to my satisfaction and a section that if my caregiver had to handle the drug they had to wear gloves and I understood I needed to inform them and I nervous laughed and asked what were they asking me to swallow if people needed to suit up to hand me a pill. The poor care nurse just said they liked to be careful.

Then I had to have an interview with the specialty pharmacist that felt a little like a quiz to make sure I understood all those side effects and the gloved caregiver thing and I asked what would happen if someone else touched it. She said likely nothing as a caregiver should be washing their hands anyway but its a cover themselves kind of warning, If someone without cancer absorbed it through the skin through constant contact they could start to get it in their bloodstream and without the cancer to fight they could become ill.

During our forty five minute or so conversation she told me a story of a caregiver that made a mistake and gave his wife three a day of the ibrance and only one of another medicine. I asked what happened to that poor woman and she said it only went on for about a week but it was enough to bring her wbc and other counts to nearly 0 and she was hospitalized for weeks recovering. For some reason that makes no sense that scared me more about other people handling them than the waiver. So everyone got a don't touch those pills without gloves lecture and never ever give more than one if I need help and I always made sure to keep my pill box tucked away safely just in case.

I remember asking about the double flush and bathroom carefulness that you get with IV chemo since this was my first line and I just didn't know and everyone always reassured me that it wasn't needed with ibrance. It's very mild and they'd never heard of an issue, just be clean and sanitary and it should be fine.

I'm always amazed that we have the same medicine and get such different things reinforced to us. Like not one person on my team said to drink extra water, only that if you get diarrhea as a side effect to stay hydrated. I ended up seeing it here and it made all the difference between feeling pretty icky for about two hours after I took my pill daily to feeling just fine afterwards.

[Beryl71 in reply to Lokilinda]

That's interesting! I had lots of guidance when I had iv chemo a long time ago, but there were no warnings for my husband. X

[Hazelgreen]

Hi Beryl,

You may have already checked out ibrance.com which explains much about the original drug trials, and includes the following comment,

"IBRANCE® IS THE FIRST FDA-APPROVED MEDICATION in its class. IBRANCE is a targeted therapy known as a CDK 4/6 inhibitor. It is not a traditional chemotherapy. Taken in combination with certain hormonal therapies, IBRANCE works to put the brakes on cell growth in both healthy and cancer cells. This helps slow the progression of cancer, but it can also cause side effects, some of which are serious. Please see Important Safety Information."

The important safety information includes a long list of possible side effects including low red blood cell counts and low platelet counts, dizziness, shortness of breath, infections, abnormalities in liver blood tests, diarrhea, vomiting, etc.

According to Wikipedia, ibrance (palbociclib):

"A majority of patients taking palbociclib experience neutropenia, a condition where a patient has an abnormally low number of neutrophils. This side effect impacts the immune system, and is thus likely responsible for the second most common side effect, infection.[13] Leukopenia and anemia are also frequent among patients taking palbociclib.[13] More than 10% of patients also experience side effects such as fatigue, nausea, diarrhea, respiratory infection, headache, thrombocytopenia, vomiting, and decreased appetite.[14][13] The FDA also indicates that patients should be vigilant to monitor themselves for any sign of pulmonary embolism. "

Perhaps, the possibility of pulmonary embolism has forced the makers of IBRANCE to warn against mishandling?? I didn't look online to check whether there has been suits against the manufacturer. Anyway, forewarned is forearmed, right?

[Beryl71 in reply to Hazelgreen]

Yes but for cytoxic drugs it mentions flushing the loo twice and taking care with contact with other people!

[Hazelgreen in reply to Beryl71]

Perhaps the concern is all about the possible infections users of Ibrance might have, and pass on to others?? Since you're in the U.K., perhaps the regulations regarding cytotoxic drugs are more stringent than they are in Canada?

[Buffwright]

I was on Ibrance for 3.5 years and never took any special precautions. The way the warning is stated, I wouldn’t want to put it in my mouth!!

[luvnak907 in reply to Buffwright]

I was on it for over 5? No one said a word about anything. Oh, except don’t drink grapefruit juice. 👌🏻

[Hidden in reply to luvnak907]

When did you discontinue it, and why? I’ve been on it for 20 months along with Faslodex.

[luvnak907 in reply to Hidden]

Last pill at end of December. No one could tell me if it was keeping my cancer at bay because I was NED before I got on it. I was NED while on it, NED when I would take 3 months off. See the trend? I am pumping poison in my body with no clear evidence that it is doing me any good. We know it def is doing some bad stuff to me. I made the decision and been at peace with it. I was just getting weaker be weaker on it. Even though it just tanked my WBC and I had been reduced to the lowest dose, I had to drag myself through that last week of being on it. I was exhausted. 🤷‍♀️ I went with my gut telling me it was doing me more harm than good. <—— nutshell version. Lol

[OceanBreeze3 in reply to luvnak907]

I have thought the same thing because I have had a very similar experience with Ibrance. I have also taken CBD since the start so I question which one or all is working. I was NED after 3 months on Letrozole & CBD. Ibrance was added, which I only took for 2 cycles then Covid happened - went off Ibrance for 6 months. Still NED. I asked Dr. why I had to go back on Ibrance if I was doing good, why not wait and introduce that when progression shows again. He said, "it works better with Letrozole and could extend the progression time". So I went back on it - thankfully I dont have any side effects. I just hate putting extra drugs in my body if not absolutely needed.

[NPmary in reply to luvnak907]

That's great, good for you!

[Beryl71 in reply to luvnak907]

Yes I saw that,!

[Beryl71 in reply to Buffwright]

I would have taken anything the way I felt. But it was the warning about side effects that scared me, but none came to fruition fortunately!

[USIrishcolleen]

I did not get ANY special instructions about Ibrance; handling of it, or otherwise. It could have been Tylenol, for that matter. Not a SINGLE “red flag” warning about the mediation. I was also fortunate not to have a single side effect; I drank a lot of water daily even before having Ibrance prescribed. This will be an interesting question to ask my med onc next week. “Why is there such varying differences in instructions while taking Ibrance?”

Best!

Colleen

[Beryl71 in reply to USIrishcolleen]

I've had no side effects either! As far as I'm concerned they're the magic pills. X

[Sammie76 in reply to Beryl71]

Can I ask what you are taking with your Ibrance.....is it Letrozole?

[Beryl71 in reply to Sammie76]

Yes, letrozole.

[Sammie76 in reply to Beryl71]

So do you have any side effects from the Letrozole? I lost half my hair and my arms and shoulders hurt all the time.

[Beryl71 in reply to Sammie76]

Not really, occasional mouth ulcers, and I seem to get snuffly in week three and feel like I'm heading for a cold. But much better than before meds, incomparably so! X

[PinkSister2021 in reply to Beryl71]

I agree. That is what I call it too. Magical. Tumors shrunk rapidly and no progression was noted! I am blessed

[Beryl71]

Thanks, mine come from the hospital but via a local pharmacy. I just wondered if there's been some tightening of regulations. X

[Rubyjude in reply to Beryl71]

I was told by the cancer pharmacist in October 2020 to close the lid on the toilet before flushing (but not necessary to flush twice) and for anyone clearing up after any spillage (!) to wear gloves and wash affected materials separately.

[Beryl71 in reply to Rubyjude]

Interesting. Maybe we glow in the dark!

[Rubyjude in reply to Beryl71]

Ha ha! That reminds me of a story my friend told me of an argument she had with her husband about men making a mess in the toilet. He denied that he ever missed the toilet but, following a medical test which involved him having to ingest radioactive substance, he said that in the dark the bathroom floor was lit up like the landing strip at Heathrow Airport.

[Beryl71 in reply to Rubyjude]

Love it!

[Ski2sea]

Hi Beryl71,

I have to ask, do you get the fatigue at all?

I’ve been on Ibrance 125mg for two years. I get very fatigued at the 3rd and off week. My wbcs are always fine. I work full time and have an active life. I am just always curious for those who have no symptoms.

Be well and have fun. Tara ❤️

[Beryl71 in reply to Ski2sea]

Haven't noticed any fatigue. X

[love2golfwell]

I just checked my box to see if it has a similar warning but it does not. No one ever said anything to me about washing my hands before and after taking Ibrance or any other protocols that are mentioned.

[Kdiet]

Similar to other ladies, I was not given a list of precautions. Just drink lots of water. I do get tired the week off. I have been on the drug for 16 months and am on 125mg. I get my blood work done at my doctor’s office always on Day 28 of each month so that I have a consistent basis for as accurate a reading as possible. My MD is also a hematologist. On Day 28, if my WBC is low, he gives me a shot of Neupogen. Then I start right back up the next day. I have not been sick - no cold, Covid or anything else while on it and my neutrophils are usually .5 on Day 28. He is very confident in reading the blood tests etc. I let him call the shots. I really want more years. In addition to the Neupogen which is not frequently discussed on this board he also makes two points: hormonal treatments take time and are slow to work, and, only the 125mg dose was the clinical winner. Anyway, I share this only as a contrast to what others have said. I don’t play MD. In terms of side effects, hair loss is my big complaint but it seems to have slowed down. And, I can get very blue but I think that is the Letrozole as I had that in 2020 with my first diagnosis when I went on Tamoxifin. Good luck. Don’t dwell on the packaging. Maybe try to take the drug with an open mind and see if you have any side effects. I am 63 and frankly, I find just reading the newspaper scary😳

[MaryCos]

Mine doesn't have such a warning on the box, nor have I ever received instructions to wash my hands, etc.

[LadyPastor]

Ok I found this on a web site and it sounds pretty spot on. I hope this helps. verywellhealth.com/cytotoxi...

[howsthis]

my box does not have this label with the caution. i'm in the US and my box comes from pfizer, new york, NY, made in ireland. maybe it depends on who is distributing the meds. it appears in your photo that the label was added after the box was printed. have you asked your onc about this? maybe he can ease your worries. i will ask my onc about it at next week's appt. thanks for the heads up!

[Beryl71 in reply to howsthis]

I think it was the dispenser at the pharmacy.

[theresac1]

So, those of you on Ibrance, ( I have been on it since July 2017, down to 75mg. due to low WBC). Side effect for me is dizziness for a couple of minutes, then I'm fine, and fatigue. Question though: Are you staying in due to Covid? I have been working virtually since March 2020, and no one has been in our house. I only on walks and doctor's appointments. My husband is very very safe! He works from home as well. My kids are going to virtual college classes. We have all been in since March.

And another question: Are you all going to get the Covid vaccine?

[Lilykristymichael in reply to theresac1]

I had my first Covid vaccine shot one week ago. Will get the second in one month. My oncologist urged me to get the first one available. I had no side affects. I understand the second dose may be different. From what all of the experts I have heard, a person with a compromised immune system should definitely get the vaccine. -Madlyn

[Beryl71 in reply to theresac1]

I've had covid vaccine part one and was pretty poorly for a couple of days then tired. But fine now. I had a government letter to shield so that's what I've been doing. X

[Lokilinda in reply to theresac1]

I had talked to my care nurse and we decided it was a good time for me to get mine last week.

So I was on the waiting list here in Pennsylvania to get mine when my oncologist called and said I need to wait for the Johnson and Johnson one.

It's because I had an extreme reaction to paclitaxel (iv chemo we tried twice and had anaphlaxis). She explained they have some similar components and some people with this allergy had reactions to the pfizer vaccine and it's not worth the risk.

Just thought I'd share because I know the paxlitaxel allergy is out there and I'm not sure how widely know the reaction is because this is all so new.

Can't wait for Johnson and Johnson to get approved!

[Beryl71 in reply to Lokilinda]

I had AstroZeneca and next one is end of April. I can't wait! X