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Taking Ibrance and Faslodex

Hi I am new to this forum. I am on the verge of making a decision whether I should take Ibrance or not. I just restarted Faslodex injection again. I was on it for 4 years and stopped all treatment for 2 years and now the breast cancer has spread to liver and lymph node. My oncologist wants me to take Ibrance in combination with Faslodex but I am kind of scared after reading the list of side effects and how to handle the drug. But after reading some of the posts I feel a bit better with taking Ibrance.

For those who are taking Ibrance: what is the best time to take it? how careful are you when you’re handling the drug, can you take it while others with you?, is it safe to have sex or kiss your husband?

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Hi Caribou9

I've been taking Ibrance and Letrozole for 7months with no side effects except joint pain and stiffness which I think comes from the Letrozole.I was careful early on as I was traveling a lot .In the first 3,months I got several colds and had to go off Ibance for a few days and then a week or so. Lately tho, no colds! My white counts seems to have been acceptable since I began.I take it after dinner and am not really very careful about handling it!!!( maybe I should be???)

I hope the Ibrance is doing its job,b/c I have found it to be 'easy on me'

Hoping good things for you.

M

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Hi, I've been on ibrance 125 and faslodex for a year. I know that a lot of ladies experience side effects but I just get fatigue but it's not severe.

I had one month on ibrance and letrozole and it knocked me sideways.

It's important that you take the ibrance with food and at around the same time every day, so I take it with my evening meal.

I work full time and have never been told to avoid kissing or intimate contact. I've never been told to take precautions when handling the ibrance tablets.

I still work full time and live life to the full. I had a scan last week and still have no progression or spread. Hope this helps.

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I take my Ibrance right after dinner. I don’t take any special cautions when handling it, it goes in my pill box with my other pills for the day. I just be careful to not have any of my medications out when my grandkids are over. Tiredness is really my only side effect and while that keeps me from doing as much as I would like to do, I’m grateful that it is doing its job of keeping my bone mets in check. I would much rather have a little less energy and be able to spend the next 20 years being an example to my children and grandchildren than not be here at all! I take Letrozole as well and it causes vaginal dryness as well as dryness everywhere else so that causes more problems with sex than Ibrance. I did lose about 2/3 of my hair when I went on Ibrance and I was beginning to despair that I was going to lose it all when it stopped falling out and now it seems to be getting thicker again. There are many of us on this drug and we are happy it is available. Side effects are an individual thing so your experience maybe different but after a couple of months you do get acclimated to it. Good luck! Elaine.

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Thank you for your comments about your hair. That is encouraging and I badly need it. Did you use any special hair treatements?

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I’ve used a Redkin hair oil because my hair was also pretty dry but that is all I’ve done.

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PS...it’s just like any other pill. I take it in my pill box out to dinner and take it as soon as I finish my dinner. I kiss my husband and grandchildren. It doesn’t make you radioactive or dangerous. 😄

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I am on ibrance six months now. I didn’t want to take it out of fear but I read up on the trials and decided to trust my oncologist again. Little side effects- worst one is chronic fatigue. I get faslodex and xygeva once a month; faslodex more than a year. You will be ok. No precautions necessary handling the pill and enjoy sex if you have it😘

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Hi

I’ve been on Ibrance 10 months..only problem is anaemia so I sometimes have an iron infusion

The brand I have are capsules so handling them isn’t an issue as they’re enclosed within whatever the capsules made of

Just take them and get on with your life and stop worrying..you’ll be fine

Barb xx

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Hello! I have been on Ibrance since September. No physical side effects at all. I was switched from 125 to 100 mg last month after a constant battle with low WBC but since making switch...smooth sailing. Scans show shrinkage in most of tumors(lungs/lymph nodes/rib) and the others are stable with no progression. I hope you decide to give it a try and do as well as most of us on here. We are all rooting for you and always ready to lend an ear and support! Hugs Aimee

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Thanks 🙏🏼 so much for all the replies. I am so glad to find this site because i’ve been worried a lot. To hear the stories and experiences of others helps me fight and not worry too much.

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Caribou...I'm a bit late to the game, but want to also encourage you to take the Ibrance! It has been proven to nearly double the time of progression free survival from endocrine therapy. AND the side effects seem to almost always be mild/manageable. Low blood counts..who cares? Fatigue...slog through it! You're alive and not hooked up to a chemo infusion.

I am somewhat obsessive about my Ibrance...have been on it for four years, and am convinced that it is extending my life, not to mention my quality of life! I ran into a bunch of Pfizer employees at a rooftop bar in NYC near their headquarters a couple of years ago and, when they were griping about work (justified, no doubt) I told them that I cannot thank them enough for contributing even in a small way (e.g. folks from the finance department) to the great things that Ibrance has done for me... :) Best wishes to you! Lynn

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Thank you for your story. I have been on Ibrance for a year. I hear stories like yours, four years and better, and then I hear other ones. I guess all of us are individual but this uncertainty is killing me (pardon the pun)!

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I started on Letrozole last March and Ibrance the following month. My onc said Ibrance is generally well tolerated. I literally sat there looking at the capsule for 1/2 hour before I swallowed it. I was terrified. As you've seen from these responses, you can have little or no side effects or bad side effects. I started on 125mg and experienced some stiffness and occasional GI issues (constipation, pain, the runs). My hair started thinning, and I've lost maybe 1/3 (it was already thinning due to age), but I still have enough to get by without a wig or hairpiece. I use one of those hair fiber products (Toppik) which helps hide my scalp where hair is very thin. After about 7 months, my hair stopped falling out. I can't tell whether it's growing back or not. My eyebrows have thinned as have my eyelashes. I'm 72 and have to use eyebrow pencil for the first time in my life. My skin seems dryer (however, it is winter and I live in Chicago) and my nails seem more brittle. My neutrophils are low but within the accepted range. Everyone I hang out with has had colds or influenza, but so far, I haven't been sick.

All that being said, this drug works. My tumors have decreased by over 50% and the bone mets have stabilized due to the Xgeva shots. I've reduced from 125 to 100 and GI issues are mostly gone. There is evidence that if the Ibrance works, it doesn't make any difference if you're on 125, 100 or 75mg - basically, if it works, it works regardless of dose. I take it with my evening meal, and take the Letrozole before bed with other BP meds.

Take a deep breadth and start on the medication. Give it time, and give your body time to adjust. You can always reduce the dosage. The most important thing is that it works.

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Hi. Caribou9! I would go for it. I just got some bone scan results back today and the Ibrance in combination w/Letrozole was responsible for shrinking up a lot of my tumors. I was recently taken off this regimen after 26 months and am grateful to still be here. I got a long period of PFS from these drugs. I hope the same will happen for you w/Faslodex and Ibrance.

Best,

Dianne

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Ibrance is a miracle drug that gives a high quality of life. It worked for 18 months for me and now I’m back to chemo. These 18 months were the best since I was diagnosed with stage 4 BC. My WBCs were very low but I was careful with hygiene and always wore a mask in ultra crowded places. Safe sex and occasional kisses are fine. Go for it and I hope that it works for a very long time for you. I was among the unlucky ones who enjoyed it for a short time. I know many people who have been on it for 4-5 years and are leading a near normal life. Good luck

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I take mine at supper so I have a full tummy. Handling it is not an issue just don’t let your kids or pets handle it (not that your pets can do that). I put mine in a dispenser so I don’t miss one. It isn’t as toxic as it seems. I have extreme fatigue with mine and that has been my only side effect. It may take a month or two to adjust.

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I'm on 100 mg. Ibrance after the 125mg. dropped my WBC down to a borderline number. After research, I found an article that said 100 mg. had the same effect fighting cancer as the 125 mg. without the side effects. I would try the higher dosage (they will need to check your WBC 15 days after each start for the 1st 2 rounds). I kiss my husband but honestly, with all my other health issues, we haven't had sex in several years. His comment,"marriage is more than just sex, it's about loving someone and just being with them." Special man.

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I have been on Ibrance 125mg and Letrozole for 24 months. I was diagnosed de nova with bone mets in April 2017. I feel very blessed that this medication is available for us. I have minor side effects just like everyone else but nothing I can't live with. My scans have been good since September 2017. I take mine after dinner every night.

I encourage you to take Ibrance and live every day with hope for a cure for MBC!

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I am taking ibrance now on my 7th round coming up this week. Never had any bedside effects ..but my blood counts dropped 3 out off 5 times ..but then I am off for another 7 days .had a scan done after 4 months and lung did improve but my bone has got worst..but its not from the ibrance . it the damn cancer they tell u not to handle the pill I just pop it in the cap off its bottle and pop it in my mouth. Now about been intimate with your hubby ..I Cant answer that ones I am a widow ..slash single .. They do make u tired at times ..but rest when u can and go when u are able to. . .. .

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They check blood after your 21 days treatment ..then off for 7 . this pill does knock your blood count down.

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I'm just starting ibrance. I thought according to what my RN said, they check your blood count not right after the 21 Day cycle but after the additional seven days, before you begin the next round of ibrance pills. Can you or someone else clarify that for me please?

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For the first 2 months of Ibrance I had my blood levels checked every 2 weeks to monitor my reaction to the therapy. After that I get my labs checked once per month.....on the day before I am scheduled to start the next treatment.

Sandra

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Okay thank you for clarifying because I am going to be traveling when I have to get my lab checked. FYI for those interested, my RN is telling me I can have my lab checked anywhere on the road, she will fax the information she needs to whatever facility I choose. I will be taking attend a road trip and I'm not sure where I will be. Just a tip for those currently take it in case you think that you can't travel when you need your labs

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They do my labs on me every month when I get my Faslodex injections.

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I've been on Ibrance and Falodex for the past 11 months and have had little side effects. I usually take it with my breakfast everyday and no special care is needed. There is no problem with interaction with people or loved ones, and yes, you can have sex! I have some watery eyes and at some point during the month I have diarrhea on and off for a couple of days. You can take Imodium for that my onc says, but because I do take a lot of calcium, I'm afraid of getting bound up. The only thing to remember is to wash your hands a lot and stay away from sick people due to the fact that your whit blood cells run low on this drug. So far, thank God, my scans have been good and I'm doing well overall! I am scheduled to have a PET scan in April, so here's hoping those results will continue to be good. We all need to pray for each other, remain positive, and trust the Good Lord to carry us! Hopefully future research brings us to a cure for this ugly disease! Hang in there! Given the choice I will continue on this program. So I truly recommend it! Kathy from Syracuse, NY

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I find it better taking it at night with food. The pharmacist told me to wash my hands after handling the pill and not to eat grapefruit or pomegranate while taking it. I also take a lactaid chewable before taking it because it has lactose in it and I am lactose intolerant. Good luck! I pray the Ibrance works for you! 💘 Marianne

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Hi, just checking on your post about pomegranate juice. I am just finishing my first cycle of ibrance. I've been very careful not to drink any grapefruit juice. It says nothing about avoiding pomegranate juice on the official ibrance site. I did drink a smoothie that had less than 2% pomegranate juice in it the other day. The next day I woke up with a very red face and rash. I know that can be a side effect of ibrance oh, I'm just wondering whether that pomegranate juice possibly had a detrimental effect. It was such a small amount, I thought I would try it because I haven't read anything official about the pomegranate juice. But I did read on another site to avoid that as well, it bothers me that it's not on the official ibrance site. Did your pharmacist elaborate at all about the pomegranate or if anyone else is reading this post, have you had any experience with pomegranate juice?

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Hi there. Sorry to jump in. I was definitely warned to avoid pomegranate and it is stamped along with grapefruit on each bottle of Ibrance I get. Yes I noticed that the official site does not mention it but you will see it mentioned in lots of other places. Here is one site I trust for web information and you will see it mentioned there. I avoid it and am so sad as I used to love not so much the juice but the actual arils. Oh well.

Sandra

mskcc.org/cancer-care/patie...

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Thank you for letting me know about this. I did consult that site and it also much is star fruit and Seville oranges. And no my bottle of ibrance doesn't say anything about avoiding either grapefruit or pomegranate and that's all quite upsetting. In fact I would like to send a note to Pfizer to find out why it's not on their site. You hear so much fluff, sometimes you don't know what to believe. I think I will contact my doctor and ask her about this. I don't want to think that my reaction was from that little bit of pomegranate juice, but who knows. I guess time will tell, thanks again.

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Wow I am shocked that your pharmacist didn't tell you about avoiding grapefruit. That is a known fact. Interesting but when Ibrance was first released Pfizer.com actually had pomegranate listed in their patient info but from what I understand removed it because they had not studied it on humans. Since then however scientists have studied and included it in their warning info. Even stranger Pfizer Canada does include it.

pdf.hres.ca/dpd_pm/00039422...

Yes I was told about starfruit and Seville oranges as well but I don't eat either so I forget about that. Here's more.

cancerresearchuk.org/about-...

Also check page 5 of this program. The entire resource is actually good.

ce.pharmacy.uconn.edu/wp-co...

Sandra

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I think my pharmacist actually mentioned the grapefruit warning verbally, but it just doesn't say it on the bottle. Thank you for this wonderful information you sent oh, it is upsetting about the pomegranate juice, and actually pretty scary sometimes. You really have to do your research thoroughly about these things. Thank you for taking the time to direct me to these wonderful sites

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I was warned by my onc and the pharmacist not to have grapefruit or pomegranates.

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Welcome Caribou9. You have had many great replies from the ladies here already and I am late to your post. I would definitely encourage you to start taking the Ibrance. There are many studies to support the fact that taking it in combination with either Letrozole or Faslodex causes significant delayed progression free survival time in the majority of patients than taking just the Letrozole or Faslodex alone.

Honestly if you read the side effects of any drug profile in depth I don't think we would ever take anything for fear of the side effects or the what if's? Just think of those specialty medication commercials that you see on TV.....would scare the crap out of most people but yet.....many people are taking them and thriving. I've just started cycle 11 of Ibrance and Letrozole and it took a little while to adjust but basically other than fatigue and hair thinning the side effects are very manageable and certainly worth it to continue living.

I don't think it matters when you take Ibrance as long as you make sure you are taking it with protein food and I was always told to make sure you swallow it with a full glass of water which I have done. I always wash my hands after handling medications of any sort so I certainly do with this drug. As for intimacy of course it is safe. I am happily married for almost 33 years and not sure I would accept a therapy that wouldn't allow me to kiss or be kissed by my hubby again. Remember we are all hoping for this to work long term and when it fails then it'll be on to another equally side effect burdened drug.

Unfortunately cancer is a very strong beast and you have to fight it with equally strong medications to keep it at bay. Make the decision that is right for you but make sure you are totally clear on the potential consequences of not accepting the 'gold standard' therapy that your oncologist is offering. Good luck. You can do this.

Sandra

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I take 75mg late at night no problems just hope it’s working. I have scans in a month.

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Being around others is no problem. These are not chemo agents and even if they were you don’t have to isolate yourself. The most important thing with Ibrance is to take it with food. It aids in better absorption. I have had no side effects whatsoever so please don’t be afraid if these drugs.

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Hi, I have been on Ibrance and faslodex for a year with good results. My only main complaint is the fatigue. My butt hurts for a few days after injections but can deal with that. I am the only one who handles the Ibrance. I have a gentleman friend and we kiss all the time. As for sex it's few and far between due to dryness and lack of interest on my part, if not for that it's ok to be intimate. He is very understanding.

I take mine at noon because that is my biggest meal.

Best to you,

Robin🌷

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The only things I was told was to wash hands before and after handling, and do not put them in a pill sorter with other pills. I’ve been on this for 18 months and it reduced a 6 year old tumor from an inch to can barely find it.

I have lost a lot of hair and I do get tired, but it’s doable. Watch out for mouth sores. I rinse with baking soda routinely and seldom get really bad ones any more.

My husband and I continue to kiss and be intimate. No issues.

I hope this helps.

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