I'm taking Ibrance 125, faslodex and Denosomab and I'm a bit confused about its effect on my immune system, so I'm hoping that you may be able to help. My job involves working in a crowded office and attending meetings where there are members of the public. The breast care nurse has told me that I need to avoid contact with possible infections between days 3 and 7 of the cycle, same as with the TAC infusion chemo I had previously, but this doesn't make a lot of sense to me as I'm taking a tablet every day for 21 days, surely my immune system will be at its lowest on day 21. I asked my oncologist and got a bit of a telling off for questioning the nurse's advice but I don't think he was really listening to my question. I'd be interested to know if others avoid contact at specific points in the cycle and how seriously it's done. Any advice gratefully received. Thank you 
Risk of infection: I'm taking Ibrance... - SHARE Metastatic ...
Risk of infection
I’m no doctor but will share that i was and am careful about germs at all times. When i was on ibrance my lowest point was at end of cycle. I was super careful. Truth is we all have to be germ weary all the time. We are susceptible to everything. I wear masks when on airplanes, i do not touch my eyes or lips when i am out unless i sterilize first. At the end of the day, short of living in a bubble, all we can do is be cautious. I hope ibrance works for you. It was my favorite treatment because it was super manageable
Thank you. I've been really well on the ibrance, just about to start my 5th cycle. I'm very keen to continue life as normal but having had 3 days in hospital on intravenous antibiotics when I was on TAC chemo 2 yrs ago I really don't want to repeat that experience
Im so happy you’re doing well on ibrance. It really was my favorite and in cancerville it’s hard to find anything we can even remotely like lol
I get what you’re saying and agree that it’s not something you ever want to repeat. Just do your very best to avoid germs. I’ve learned that’s all i can do because sometimes we are out and about and don’t even know who is around us with dangerous germs. Im sure you’re gonna do great!
Thank you i am feeling so well, better than I have in years, and I really want to stay like this
I know you do. You feel like you have your life back, which is priceless!! 😁
😊
Hi, Monica!
Do you mind my asking what your treatment regimen is currently? Thank you!
Linda
Good morning Linda!
I don’t mind at all. I exhausted all hormonal treatments, so I am starting on oral chemo. As a matter of fact, I start today because oncologist was waiting for my pneumonia to clear. I am starting Xeloda (Capecitabine). I will admit I’m nervous because the thought of any type of chemo freaks me out but i have to take something as my cancer is accelerating.
Have a fabby day!
Don't be nervous xeloda is a great drug- I've been on it for over 2 years- hand and feet are my only issues-I started out at 4000 which was too high now take 3000-
MMMP thank you! I started and I’m taking 4000 which i feel is too high. I plan to call oncologist and request they lower it. I am so weak and tired I can’t get up. Not how I want to feel. Are you able to move about and have a life??
I worked today and played 8 holes of golf afterwards- I did take a golf cart- just keep moving- and have fun everyday!
Thank you. Gives me hope. We lowered dose to 1000 a.m. and 1000 p.m. I really hope this works because right now between the nausea, exhaustion, and light headedness I feel like crap.
MMMP, how do you combat diarrhea and nausea? This is the worst!!!
Took zofran for nausea never had diarrhea!!
Im taking zofran. Hopefully, the rest will resolve itself. Thanks for the quick reply. I really appreciate it 😊
I've been on ibrance 125 and letrozole, xjeva for bones, xerelto for a blood clot( from the port) in addition to thyroid meds vitamin d,b6 and calcium.
Started 16 months ago after 26 weeks of red devil, lumpectomy 1 lymph node removedand 6 weeks radiation. I was diagnosed with stage 4 MBC. inIn
the beginning my hair which had started to grow stopped, continued to fall out, nauseous in AM, and tired. I am cautious about infection, stopped teaching actually got an infection from a mosquito bite. It seems like my degenerative disc disease is progressing faster. Survived food poisoning.
All my scans etc still show NED. Very grateful for all research and my wonderful Drs in Raleigh NC
Geez Mimi
We can write a book with many chapters of all the things we’ve experienced. Im sure most of us can! Just hang in there and keep kicking back. That’s my daily mantra: you kick, I kick back. Sounds crazy but it works for me. Keeps me going 😊
I’m two years on Ibrance and letrozole my white blood cell counts are usually low but I volunteer at my local hospital once a week.
Kudos, Karen! 🌸
Hi julie
It’s difficult to not get obsessed with keeping germ free..I’m afraid I’m a bit lax..apart from hand washing I don’t do anything special..go on planes cinema shopping..around animals all the time..so far ok
B c
Thanks, that's interesting to know.
I had my oopherectomy at 43 but have never regretted it, even though for some time I had severe hot flushes. I have always believed it was paramount in keeping me alive. I had the operation key hole vaginally which was not the norm then so very quick recuperation time. Important to me as I was working full time.
Thank you for flagging up you were on Denosemab. I am going to have it on my next cycle. I was told to get a dental check up before my first injection. I didn’t think to ask why but have since read some people have jaw problems? Anybody else told this? I am due my 6 monthly check up but wondered if there was anything the dentist should be looking for?
I am also alarmed I am gaining weight, the oncologist says this is normal. I take my pills in the morning so I can put it to the back of my mind until next day but therefore eating breakfast which I used to skip and trying to adjust lunch or dinner to take it into account but it is a significant gain. I am usually a standard 10. Have you or anyone found weight gain a problem?
Thank you for the hair loss advice, now using Alpecin caffene shampoo alternated daily with an organic rosemary volumising shampoo and rubbing Alpecin Caffeine liquid, every night into my scalp. Although I may be kidding myself as it’s early days, I am sure there is less hair in my comb!
Best wishes to all
GiGi
The denosemab can cause problems with the jaw if you need extractions or deep fillings and a lot of oncologists will often suspend treatment until the work is done. That is why you are advised to have any dental work done before treatment starts. Saying that, I spoke to 2 dentists and they both told me that as long as they were aware I was taking it, they didn't think it was a problem.
When I was on tomoxifen last year I suffered from awful hot flushes and was constantly hungry. Despite eating very sensibly I suffered from a steady weight gain (I went up 2 dress sizes which was a lot for me as I've always been slight) it stopped as soon as I stopped the tablets. I'm now on fastolodex and my appetite is back to normal and I've gradually started to lose some of the weight.
I hope the caffeine shampoo works for you. It was bizarre but I was less upset at being told about the bone mets than the hair loss. Think that says a lot about my vanity
Julie
Hey, Julie!
First off, BIG BOO to your onc! As if you needed more stress!
Your monthly labs will tell you if your WBC is getting too low and whether you need to be more cautious with public contact. Typically, as in my case, you will simply have your dosage lowered and continue to be monitored. I've never been told to wear a mask or be extra cautious during certain times of my cycle of meds (I'm on same regimen as you.) And I'm being treated at a top tier cancer clinic in Seattle.
Not sure if your onc is a man, but I saw a feature on Good Morning America yesterday that provided some evidence that male doctors, as a whole, are not as interactive or nurturing as their female counterparts. I sure found that to be the case. My first onc was a man and second one a woman. What a difference in discussion and interaction! Of course, I do recognize that this is absolutely not true down the line--there are superb male MD's all over America--but it sure provides room for thought.
Good luck in making a decision and on this stressful journey! Linda
Reply
Thank you that is really helpful! And reassuring
Do you mind me asking how long you have been on this regime?
I shouldn't really critisize my oncologist and you are right he is a man, but he is so much better than my previous one. She constantly told me off, usually for following the nurse's advice because I wasn't able to contact her. She also thought I was irresponsible because I am allergic to penicillin! As a person I think she would have been great fun to go out for a drink with, but as a doctor I think she was trying to outdo the men in inability to listen and failing to explain. I was given the option to have chemo as I was a borderline case, but as I've lost 3 aunts to breast cancer I opted for it and her comment was 'I knew you would, you're the type'!
I really wish I could set up a company to improve doctor's communication with patients. And I'd start with the one (male) who casually told me that I had a 20% chance of being dead within 5 years and that was before the mets were found! Please excuse my rant! 
Thank you for your good wishes!
Hi, Julie!
I've been on Ibrance/Letrozole/Xgeva for 8 months, since December 2017.
And once again, WOW!! Your rants are well-earned! Can't imagine a doctor stating that, "You're the type," when you opted for chemo!! What is that supposed to mean--to me, it says that you are the type who doesn't want to take chances with your own life! Unbelievable.
I was Stage 1 eighteen years ago and chose a double mastectomy. There was no cancer found in lymph nodes, so no follow-up was suggested, not even tamoxifen. Then, Wham! It shows up as mets to my spine 17 years later. Last thing I ever expected!!
I do feel lucky that I am retired, kids are raised, and I can nap any time. And I do nap a lot. If anything, I have found that this mix of meds can really zap my energy. That is truly my biggest complaint so far.
Love and prayers to you, Julie! XO Linda
What a shock for you. In a way I was lucky because I was expecting it.
I was diagnosed in April 2016 and they found minute traces of cells in my sentinal nodes but my lymph nodes were clear which was why I was border line for chemo. But with so much cancer in the family I just knew it would be back, my oncologist thought I was over reacting. (My mum had 9 brothers and sisters, 5 died in their 50's or early 60's due to cancer) one had breast cancer in her 20's and it hasn't returned, the other 3 have some form of cancer now but they are much older so it is age related. Only my mother is so far free of the disease.
But in a way seeing so many relatives go through it has made it less scary for me. I know treatments are so much more effective now and getting better every day. My aunts with breast cancer and my uncles with testicular and prostate cancer remained well and fit until the very end. The had such positive approaches. They weren't ruled by the disease, they continued to live their lives and did it well.
I still work full time but if the fatigue hits me as it sometimes does it the afternoon, my lovely colleagues in the office just let me have a nap. When my daughter was born she was a poor sleeper and I perfected the art of being able to sleep sitting up - a really useful skill now!
God bless those wonderful colleagues of yours! And I had to laugh out loud about sleeping while sitting; I have a twin sister who still works full time and she will sometimes fall asleep just like you describe (of course, when she's home.) LOL!
Also enjoyed your family background. I believe in the power of positivity; so far, I've had just one meltdown and it was just this past week after reading a beautiful, compassionate reply from one of the women who shares on this website. She made me realize that I was afraid to cry because I'd feel as if the cancer was winning. Instead, it provided a much needed release of well-guarded emotions.
God bless you, Julie!
I think the odd melt down does us all the power of good, it blows the cobwebs away and makes us realise how strong we really are
Julie you sound like you've ended up with docs who really are not compassionate! I feel bad they say these things to you. I can't help wondering where abouts you are located?
I agree too, seems like you would have more chance of infection over time. I mean the ibrance lit tells you to get blood work in day 15, so days 3-7 makes little sense.
I seem to attract doctors with negative attitudes, no idea why, perhaps I'm just over sensitive.
I'm in the uk, in a part of England where the national health service isn't particularly well funded so resources are very stretched.
Yes, following the advice from '1998withStage4' below I've found that the nadir is day 15 although my bloods are always done on day 27 just before the next cycle starts. So I'm still not sure why I've been told that the most dangerous part of the cycle is day 3 to 7.
There is a thing called the Nadir which is the time your immune system is at the lowest point in the treatment cycle. They track this through blood tests. During the clinical trial, they took blood samples daily from patients enrolled. From that data, they determined the average nadir point. The results might not make sense to us but it’s based on science. They should have explained that to you.
Ah thanks, that makes sense. No, no-one has mentioned the nadir, I'll go and do some research!
This provides a great explanation, Julie: chemocare.com/chemotherapy/...
Thanks that's a really useful website, I've not seen it before
I have been having a heck of a time on Ibrance. I started on the 125 and after 10 days I had to stop due to extremely low white blood cell count. I was off for 3 weeks before I could go back on the 100 dose. Now after 11 days had to stop that one due to extremely low white blood counts and bad red blood counts. Almost all my blood work was too high or way too low. I was very fatigued, sick stomach, bruising, and sores in my mouth. Tumor is continuing to go up too. I’m also on faslodex injections and xgeva. So now they’re trying to decide what next. Plus telling me I may need b12 shots and folic acid. I go back next for more blood work. Seriously trying to decide whether to get a 2nd opinion now. I’ve been off the meds more than I’ve been on. I was told to stay away from crowds and sick people but if I continue to do that right now I’d be a hermit.
You have been having a horrible time, I can understand why you are fed up. I went for my injections yesterday and to start cycle 5 of the ibrance, the nurse's were saying that many patients have problems tolerating the ibrance. I'm sure an effective alternative can be found for you, there is so much more available now than there was a few years ago.
I also know how you feel about staying away from people, which is why I asked my question. I know I have mbc but I still have a life to live which I'm determined to do as well as I can and I don't want to lock myself away, though perhaps until you get your bloods up again it may be best to limit your exposure to possible infection.
Incidentally, I take a vit b12 tablet everyday, if I don't I get a geographic tongue which is quite painful
👍
Oh my gosh, I had to see an ENT doc this week because my recent PET scan showed a spot at the base of my tongue (when thankfully all my previous hot spots were clear and doctor said I was NED but should have ENT check the tongue). The ENT doctor checked tongue, did an endoscopy, and said it was nothing to worry about, but also said it "could be removed, but not worth doing that." But no name mentioned and left me totally wondering what it was. I just looked up geographic tongue and it looks like exactly what I have. I don't have pain from it--just looks weird, but it was a concern since it came up on the PET. I've been taking Vitamin B for years for other reasons. Wonder if it's related to meds...
The only pain i get from the geographic tongue (which it's strangely marked areas on the tongue and often gets mistaken for oral thrush) is when I eat sharp fruit like pineapple, and then it really stings like it's been burnt. I've had it for years and the dentist and doctor both told me that there was no cure, but doing some research on line I found lots of people saying a vit b12 supplement would help. So I tried it and it completely disappeared. As soon as I stop the supplement it comes back.
Great news on your test results!
Thank you! I appreciate your info on this. Thought it was weird how the ENT didn't say what it was and seemed kind of inconclusive, as in when I asked him if there was anything I could do for it, like gargling with salt water or something. He said "no;" then a minute later said, "oh, you could try it." Also said more than once about removing it not necessary or worth doing. I'm looking forward to seeing the report he said he's sending to oncologist when I see her in a few weeks. I sent my kids an e-mail last night with what I learned from you about geographic tongue, and two of my daughters e-mailed me back that they have or have had it and it was identified by dentist for one of them! Mayo Clinic online did say it is hereditary. Pineapple doesn't bother me. I eat a fair amount, especially the weeks before blood draws because my veins are sometimes a bit elusive and I was told it can help.
In response to your initial concerns about risk of infection, my oncologist strongly advised me to give up several of my regular volunteer activities due to risk of infection. I had volunteered for around 5 years at a monthly inner-city health clinic where many of the visitors were homeless. I worked in registration so had one-on-one contact with new people each month. I also volunteered weekly at a local public school and monthly in church nursery. I did give up those activities, which was difficult, especially the clinic since I'd been doing it for so long. At first I had a hard time with it, but it's going on a year now and my life has filled up with doctor appointments and several fitness classes that keep me busy (been retired for over 3 years). It turns out that my blood counts have never been seriously low, but I remember my oncologist's seriousness in advising me to avoid those activities, and also there have been many times when I would have been too tired to participate. Other than that, I haven't changed my life style, but I am pretty much of a homebody. I have a box of face masks on hand, but have only used one once in the past year--can't remember specifics of when and why.
I agree with 13plus, it might be worth getting a second opinion, just to make sure. Though I have to say in my experience not even ent consultants always know about geographic tongues. It was my dentist who told me what it was. I can't understand why the consultant would suggest removing it as it's the tastebuds that are affected if it's a geographic tongue.
I have small tough veins that move away from the needle or disappear when they try to take bloods so I'll try your tip about the pineapple
My oncologist gave me a bit of a talking to about the risk of infection - hence my question. I don't want to take silly risks but I also want to continue living. I work in local government and have contact with the public but not a lot. I can understand why your voluntary work would have been considered risky and I can understand how hard the decision to stop would have been.
I'm lucky to feel very well and I'm still working full time and don't want to give it up. I love my job and have worked hard to get it, my colleagues are my second family and give me so much support, and I've just been accepted on the future leaders programme despite my diagnosis. At a time when so much ahead of me seems out of reach my Head of Service has faith that I'm going to around long enough to invest valuable resources in and my colleagues have supported her decision.That's the biggest boost I've had in a long time.
Oh, it's wonderful that your supervisor and colleagues are so supportive of you! I can appreciate how much that must have boosted your spirits. And you know from this website that the new treatments are successful and many have been traveling this same road for long periods of time.
Re the pineapple, the phlebotomists told me that watermelon is also good. And of course, drinking lots of water. I should tell you that my blood draw problems were when I was at offices other than my oncologist's. Because my counts have remained almost normal or just a tad below, I only see oncologist once a month, and she said I could go to regular clinic for my mid-cycle bloodwork (part of same health care system, but not oncology office). It was there they seemed to have problems and also at the local medical college where I am in a study. The physician's assistant at oncology office said it's because they are used to drawing blood from "regular" healthy people, not cancer patients who may have issues. She said the phlebotomists who work in oncology are experts who know when to use smaller needles and how to deal with tricky veins. Because of that, I wound up going back to onc office for my mid-cycle checks. And last draw for the study was OK on first try--maybe it was the pineapple! 
I am the phlebotomists' worse nightmare. When I was in hospital 2 years ago I had 7 try to get a single blood sample. Unfortunately because of lymphoedema only my right arm can be used. I started with the least experienced and gradually went up the hierarchy of experience, each having 3 or 4 attempts - I looked like a pin cushion! Even the doctor failed. At that point the ward sister intervened and sent them away and took a blood sample from my ankle. She got the vein first time and contrary to expectation it didn't hurt. Earlier this year it took 2 hours to find a vein to inject the dye for my bone scan and then they gave up and put a cannula in. I always make sure I drink plenty of water, and I will try pineapple and watermelon next time all tips to make it easier gratefully received! Thankfully my bloods are only done once a month.
Oh, Julie, I feel for you. Your blood travails have been much worse than mine. 
I also have lymphedema in left arm so only right is available for blood draws. And basically, only veins in my right hand and wrist area are available--further up the arm veins just collapse. So far they haven't had to resort to other areas. I've read on a lymphedema website that in the US the regular phlebotomists can only do arms and that very few people are authorized to draw from legs or feet. Not sure if it's the same in the UK. Do you have compression garments? I wear sleeve and gauntlet daily and have "Tribute" sleeve for nighttime wear. My lymphedema arm is not doing well lately, mostly because I've been neglecting the daily MLD (manual lymph drainage) therapy since my mbc diagnosis. I'm just too tired and overwhelmed to get back on schedule and do it every day.
I have a very uncooperative body!!
Yes it's the same here, extra qualifications are required to take blood anywhere else. I'd always been told that taking blood from the foot was painful. When I had it done it wasn't, though I think the ward sister was very experienced.
I had the LVA operation last year before the mbc was diagnosed. My lymphoedema was still fairly mild but developing quickly and I had started to struggle with my swollen fingers; typing, zips and bottletops were becoming problematic.
I was worried about spending so much on the op in case I developed mbc and made it a waste of money. Now that I understand that mbc is so treatable I am really glad that I don't have to worry about my arm. I'm also allergic to some antibiotics so lived in fear of cellulitis. I am still careful but my arm now drains a lot more quickly when it swells.
I don't wear my compression sleeve and glove any longer but still massage my arm when it starts to swells. I have a lovely old fashioned narrow top hat brush which is perfect for moving the fluid. The lymphoedema consultant has said that as long as I avoid the scars the arm can be used if there is no alternative.
I had to have blood taken unexpectedly last week and I had a very grumpy doctor as the nurses weren't available. After 7 attempts he tried my lymphatic arm but it didn't work either. He eventually got about 1/2 inch in the tube from my right hand - which is where I told him to try at the start! It was like treacle! I'm drinking plenty but the message was thats not enough! But at least it didn't cause any problems with my arm apart from a beautiful bruise to match the others.
I can have really sympathise about the massage. I was told to do 40 minutes a day! Not easy when you aren't feeling brilliant.
And on the question of germs, do you all avoid swimming pools? I had been planning to take it up again when I got diagnosed with the mbc. Now on ibrance I'm not sure if that's a good idea. Btw I work at a YMCA, so avoiding germs is a bit of a joke!
I try to stay out of very busy places. Use disinfectant wipes on carts. Stay away if someone coughs etc. just do the best you can to avoid germs. I was diagnosed in July of 2016 and have not even had a cold.
Amazing Oncologist Report!
Visualisation / Meditation Techniques
Body aches ......is it Ibrance? 
IBrance alternative dosing schedule : (5 on 2 off) another trial in the works
