Just wanted some input from you. I've been on Ibrance and Anastrozole for almost a year. I've tolerated it quite well. My question may sound petty, but ...... My hair has tinned so much, my eyesight has become very blurry, body aches and I'm tired of my white blood count being so low. I'm really afraid to stop taking it, but just wondered if I did, would my hair come back, eyesight improve and feel a bit more normal? I'm tempted, but a little afraid to try. Can't see how this is good for me.
You gals are all such an inspiration.
Thanks
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AuntMildred
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In my layperson's opinion, yes, your counts and hair would improve. I don't know much about the eyesight issues, so I won't even venture a guess.
Regarding the counts and hair, I've read posts on this site that share ways folks are trying to counter these effects. Diet, green juices, etc, for the counts and then hair products for the hair. My doctor had told me, early on, that Rogain and similar can actually help with the thinning hair.
My blood counts are always very low, but I really haven't viewed this as a big issue. Do I tire more easily? Yes. But I'm kind of used to just doing less, living at a slower pace. There are benefits to this... Re: the hair, mines a nightmare. Thin, fine, wiry, going in different directions! I don't think about it often, avoid mirrors (!), and just put some product in to get like a crazy-lady look when I want to make an impression! I have no noticeable problems with my sight, but I've always been half-blind and between contact lenses, prescription glasses, reading glasses, and sometimes reading glasses on top of prescription glasses (!! This goes really well with the crazy-lady hair), I do fine, and manage to scare off anyone who might think to interact with me!!
I'm joking...kind of...as I wrote my reality I realized that it could be seen as kind of funny! But the point is that these issues are, for me, a very small price to pay for the years of really great living I've had/continue to have...
Thank you I needed to hear that. I really have no right to complain. Just don't like taking all this stuff. Loved your reply.
All of these things might improve but then you would not get the benefits of taking these. My neutrophils always go low until my doc switched my Ibrance to one week on and one week off. That keeps them at a steady level so I’m not as tired. Before I was three weeks on and three weeks off. We shall see with my next scan of this is working. I will be two years next month on these drugs.
My oncologist told me I could stop Ibrance for 3 to 4 months to see if the Letrozole would just work for me. She said if my tumor markers kept going up she would put me back on it. I lost a lot of hair on Ibrance. My hair is now coming back and I feel more normal. I am going to give it a try but it makes me nervous. Hope this helps. I did not have any vision problems.
Hi Mimigram, that is great that your oncologist wants to to get you off Ibrance and that you could get back on it in tumour markers go up. Are you based in the UK? I thought once you came out of it you could not get back on it again.
I am seriously considering trying that approach (for similar reasons as Auntie Mildred) and see if Letrozole works on its on. Ibrance (plus diet, etc) has worked really well and it seems that it has got rid of it so I do not want to be on a strong medication for ever.
I was under the impression too that you could not go back on it. I asked her several times if she was sure I could go back on it and she said yes. Of course I feel better off of it but I still have to have my markers checked every month and she wants to do a pet scan in four months instead of six .
I also take lots of other supplements as Letrozole does not block all the pathways. Have you read Jayne McLelland “How to Starve Cancer”. It is a wealth of information.
I have read "How to Starve Cancer" and if I were to stop Ibrance I would probably go to see Dr Calleabout and get some of the drugs prescribed. It would make it me feel better having that as a backup.
Are you based in the UK? If so I could mention it to my onc next time. It would be great to have the option of coming back to it if we needed to. Whenever I ask about the possibility of stopping Ibrance, they say they do not really know as it is such a new drug.
Don't feel badly that you're concerned about your hair! I spend so much of my limited energy (and money) just trying not to look sick and bald! My onc told me, after I apologized for the "silly concern," that my hair would come back after Ibrance....provided the next drug didn't cause hair loss, of course.
I'm sorry you have reduced energy and poor vision. I feel like I'm in bed most of the time. I will tell you, I dropped from 125 to 100mg Ibrance for 2 cycles due to an ANC of 500. I felt so much better. However, 4 new spine mets showed up, so I went back up.
Hi, I was diagnosed with mbc way before the targeted drugs like Ibrance came out. My first line treatment was "the other" non-steroidal aromatase inhibitor, Letrozole, which is very very like the Anastrozole you are taking. I got nearly five years from it. When these AIs work, they often work for several years so going off Ibrance may not be as big a deal as you fear. Have a in depth talk with your onc about that. And sometimes when a person has trouble with either Letrozole or Anastrozole, they can switch to the other and have fewer side effects. I've gotten the impression that most oncs just favor one or the other of them and always prescribe that. Good luck. I hope you do well as far as the cancer goes and get back your hair as it was. I sure understand about that! One of the first things I did when I got this diagnosis was to go to a wig salon and order a wig! lol Once I learned more about treatment for estrogen receptor positive MBC, I cancelled the order but I'd order one again if I were going to be on a hair destroying chemo med. I've noticed, though, in the almost 16 years I've had mbc, more and more women are going out in public with their bald heads exposed. I think that's a good thing that shows more acceptance of all that goes with having major cancer!
So happy that you have gone 16 years dealing with this. I've been dealing with it for a year and sick of it. So I should just be quiet. Love the warriors on this board.
No, for many of us, the first year or so is the worst! Such a shock to hear "you have cancer!" A huge thing to get our heads around, and that really can take time. You never need to think you need to keep quiet here! We get it, what ever your particular "it" happens to be!
Hi Aunt Mildred--love that name..my aunt Mil was a mom to me--and my all time very favorite person in the world! Miss her. Anyway-- after several months and several visits to his office, and my no-longer primary telling me the lumps I was feeling were "sebaceous cysts" and my reminding him that I had been a breast cancer patient, I asked to have a large "cyst" under my arm removed (July 2016). Thank goodness the surgeon I consulted with knew what he was doing--he took one look/touch and immediately ordered a biopsy. Yep the big C had planted itself in 17 new locations thruout my body. I was referred to an incredible oncologist --she put me on Anastrozole and as she became more knowledgeable of my body and what was the best treatment option, she changed my treatment to Faslodex after 1 month---smart lady-- the 17 identified tumors have all shrunk to the point that I can't find them with the touch method and several have completely disappeared. But, my doctor is also careful- she told me that I will be on treatment for the rest of my life.I doubt this is helpful in addressing your question, but --I wanted to tell a bit of my story so you know there are lights at the end of each and every tunnel....and with the help of the ladies who have posted here...and a pledge to NEVER stop asking questions regarding your health, I wish you all the best!!!
Thank so much. These replies are very encouraging.
I have a question related to a few of the replies...
Are you saying that you can stop taking Ibrance, just keep the AI drug going, and then when there's progression, you can remain on that AI and add Ibrance to get some more time out of it? Or are they saying that you'll move onto the next AI and add Ibrance to THAT?
I've gone back and forth w/ docs re: do I really need to change treatment with any little progression and I've been told "yes" because the cancer has outsmarted the drug and so it will continue to spread. In my view, if it spreads very slowly, I'm okay with that for a while if it allows me to remain on that treatment for more months or even longer. I view this as additive to my lifespan and assume that if the next treatment works, it will beat back some of that progression?
I'm not explaining this well, but am very interested to know what different docs are doing...Thanks!
I understand your question so I’m on an IBrance and an AI. ( My previous AI- only treatment very obviously had stopped working). Then after a while I got a second opinion for verification of plan and that’s when I found out that they couldn’t say which drug or whether both drugs were working for me as I had started them together. Ah! Ok, so I’m taking both and wondering if the IBrance is not even needed at this point! Then again I didn’t go into complete NED so I guess I need both. It all depends on your specific situation. I know my doc would not be jumping to switch with any small progression. But a very close eye on me and ready to change. So seems her thinking aligns with yours. Can you get another opinion elsewhere?
It is such a frightening path, isn't it? All the uncertainty and unknown. I have been on ibrance/letrozole (highest dose) for five years now. My hair has thinned, nails are brittle and skin very very dry. RBC & WBC counts are chronically low and I feel it! Several months ago, my ANC dropped to below 1. Definitely a change, definitely a concern. My ONC and I discussed this and I opted to make no changes at this time. The ANC came up a bit, but is still lower than it had been for over 4 years. I once had thick healthy hair, healthy nails and healthy skin. I'm tired of being tired. HOWEVER, my stage IV with mets to lung has been stable. Where there were tumors I now have scar tissue. There is no evidence of active disease. So.....guess I will take the side effects over progression of disease! This is a decision only you can make. Remember as a person fighting MBC you are in it for the long haul!
Please talk to your ONC and let them know how you are feeling.
No doubt MBC sucks. It changes you. I think the best advice is to stay informed, learn all you can about your health, but beyond that you have to let it go or the worry will rob you of the joys of life! Do whatever you can to make yourself happy!
Your eyes could be a totally unrelated problem from the MBC. Have you seen an eye doctor recently? I am 72 and just beginning to develop cataracts so my vision is not as good as it was. But I also have dry eyes from my AI medication, which makes them water because they are irritated!
My hair did fall out a lot at the beginning but after about 6 months it stopped and got a little thicker, but not like it was. I don’t have body aches but my husband does.
Basically besides having cancer, getting older sucks! I especially don’t like my lowered energy levels because I’ve always been a busy person but I just keep telling myself that a slower lifestyle is better than what the alternative could be.
Becoming content with where one is in life isn’t always easy. If it was, we wouldn’t need each other! So to you, Aunt Mildred, and all the rest of you, thanks for being around to hear us out when we need you❤️
I am on Ibrance and Anastrozole as well. I have been on Anastrozole since September 2019, and on IBRANCE since December 2019. I am on my 3rd round and honestly, i am surprised I still have hair left!
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I have no noticeable problems with my sight, but I've always been half-blind and between contact lenses, prescription glasses, reading glasses, and sometimes reading glasses on top of prescription glasses (!! This goes really well with the crazy-lady hair), I do fine, and manage to scare off anyone who might think to interact with me!! 
Just to introduce myself 
Excessive hair loss the past few months, not just thinning
Just want to run away sometimes
Just a thought
Is it just me?
