Ibrance (Palbociclib)
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HLB I agree with you completely and so does my new oncologist! Last year I was on Ibrance/Faslodex for three ir four months and the TMs kept rising which was why my old doctor pulled it off from me and moved me to Xeloda which I couldn’t take because the HSG. When I moved my new oncologist told me the other doctor pulled the trigger too soon but by then I was on Abraxane and doing well so we continued. Now that the Abraxane has done its course will be back on some of the new Ibrance-like medicine and Faslodex and this time will demand a scan before switching.
Aurora
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Hi all. Wishing you all positive thoughts this weekend. I was feeling rather crummy today when my DH suggested That we go out to dinner. I hesitated as it’s week 2 of Ibrance etc. But I agreed. We went for a ride and then to an early dinner. I had some wine with my dinner. It was very relaxing and suddenly I had an appetite. I know wine causes bc When I went to order ravioli with penne sauce I had to look back at the menu. I kept forgetting what I wanted to order but I knew the location on the page. ( this shows my memory is shot). It was annoying But I had a wonderful evening. We had a nice chat with the waiter and the owner since we were the only ones there. We witnessed a surprise birthday party for a newly engaged couple and their families. We met an old friend on the way out. It was the most normal night Ive had in a while. It made me realize I have been holding my breath for the past 2 weeks waiting for scan results, afraid I’ll pick up a virus due to neutropenia. I am trying very hard not to give into fear but I am afraid all the time. Tonight showed me that I have to continue to do something nice and enjoy time with my DH and not give in to fear. But it is TOO HARD sometimes. Wishing you all a lot of peace tonight.0
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Maire, so thankful you had a great night. I also am over careful with my neutropenia but I have decided that I don't want to live secluded. I didn't get sick with 5 plane rides, being around 2 small toddlers with new germs, my son-in-law who was very sick while I was there, or the other myriad of people I contacted on my trip. Of course I could have, but I don't want to live a tentative life--I want to live it to the full as much as I can. Friends and family are too precious to neglect.
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Maire and intoLight....you've given me something to think about. I have Grade 4 Neutropenia and my MO and trial nurse both tell me to be very careful to avoid infection and I'm such a conscientious person that I've more or less.....well, more....shut myself away from the outside world. Friends visit but I don't go anywhere except to the Cancer Centre and blood lab. This can't be good for my mental health, I know that. I'm completely positive about my cancer. I don't hold any fears about that...what will be will be etc but I do fear getting an infection and getting really sick. I'm quite happy with my life the way it is, strangely enough. I guess I've got used to it and I don't miss having meals out any more. I don't feel I'm neglecting anyone as my one child still lives at home, I don't have any other family and friends seem to love visiting.
I'm glad you had such a lovely evening, Maire.
This whole foggy memory thing is what throws me out the most. I used to have a photographic memory and I can be so sure I have something right, only to find the timeline in my mind is all jumbled. I can't remember which events happened when and I have to rely on others to tell me sometimes. I sometimes surprise myself by knowing something perfectly well yet at others when I reach into my brain for a memory all I see is grey fog! It's so annoying and tiring as well, striving to remember things. Well, that's my moan for the weekend. Feeling a bit miserable at the moment which is unlike me because my husband and son are over in your country...Washington to be exact...for ten days and, even though I'm enjoying the solitude, I miss them, mainly my son, who makes me laugh so much.
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Oh Leapfrog I know what you mean about brain fog. I too had an incredible memory. I had all these wonderful memories from my life and now they are going away. I try to recall events and people or book titles and they are just gone like little wisps of smoke. It is so frustrating. It’s changed the way I interact with my friends. Sometimes I just don’t say anything because I have been unable to finish a sentence because I can’t remember a key word.
You are such a positive force on this thread. You lift us all up. I would sure miss my DH if he was as far away as yours. My son is On the other side of the country from us but he calls about once a week. He always makes me laugh too. It is such a good feeling.
Take care. Maire0 -
Hi there - I take ibrance 75 mg 7 days on/7 days off and have had a very good response! Being treated for bone and bone marrow mets.
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Maire...I know what you mean about searching for a word. Often I let friends finish a sentence for me now because they understand what's going on in my head somehow. Aren't they great? Sometimes I have to describe something in the same way a stroke patient who has aphasia (I think it's called) does...."The white thing that you press a button on..." and things like that. If I try to find the word or to get a sentence right I start stammering. Me? Who has always been so fluent with oral expression (in other words, a chatterbox!)
Thanks for your kindness. I'm feeling better now than I did when I woke up this morning. I was feeling very unwell and it's a bit scary to be on your own without someone to ask for their opinion on "should I go to hospital because of this?" I have people I can call on but I think most of us are the same; we don't like to bother people and wonder whether it's bad enough or are we just imagining things.
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Friends, I understand your frustration with the brain fog. I call it "the day the nouns went missing"! It's much easier to deal with when having an in-person conversation than it is over the phone so I have decided to pretty much give up chatting on the phone. I never liked that much anyway!
For those of you with nausea that comes from weird phlegm, I have found something (besides Phenergen or Zofran) that helps. My daughter brought me a pot of Spicy Taco Soup and each time I eat it I have hours with no queasiness! It seems to clear up the phlegm. Don't you hate the word "phlegm" but isn't it perfectly descriptive? Away with you, Phlegm; I shall eat Taco Soup forever!!
Have a great Sunday!
Pat
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Good morning...
Maire...I'm so happy you had a wonderful evening out! When I was on IV chemo with my initial bout of BC, I was just like you...afraid to go anywhere for fear of picking up an infection. As for the wine, my doctor told me to drink a glass of wine to stimulate my appetite...as I was practically living on cottage cheese! When on the Ibrance/Femara, I didn't hesitate to go out. My oncologist said it was perfectly fine to go out with friends, to the grocery, to church etc. Just...don't "overdo". And, most importantly, wash those hands frequently! I plan to continue this way of life when I start Taxol...."if" I feel well. it is most important for our mental stability to continue to live life as normally as possible. Oh...and I asked my onco about drinking wine while on Taxol....no problem to enjoy a glass of wine now and then.
IntoLight...You are correct....!! Friends and family are to precious to neglect.
Leapfrog...I am strange, I guess. I don't enjoy entertaining company...friends etc. I do keep in contact by phone and e-mail etc. I guess, if I feel well enough, I would rather be out meeting them for lunch etc., rather than being at home.
As for memory...I can remember most things from way back when...but, don't ask me what I had for dinner a couple nights ago. When I was working, one of the doctors used to always "make a list" of everything he needed to do (outside the office), where he need to go to pick up things etc. I used to laugh at him and he said "trust me, you will be making lists before you know it"....and, I do!! I am a true "list" person when it come to the grocery, chores etc.
I hope the time goes quickly for your son's and husband's return. I live alone, but I can imagine how you miss someone you are so used to having with you. My daughter lives only a mile from me, and I really miss her and the grandkids when they are away...it really makes me feel lonely. My sister lives just a few doors down from me...that is a big help.PatG...That is an interesting remedy! Do you have a special recipe to share?
My grandson is in Nashville this weekend...going to the Bengals/Titans game. Hope he brings home a Cincinnati win...miracles do happen..LOLWishing all a wonderful Sunday!
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Ack.. the memory thing...Leapfrog.. no worries about your post... you inspire me... I teach special ed and am so frustrated because remembering names used to be my super power.. I took pride in it... now I struggle with names and yes nouns too Patgmc! You know ... that .. that .. thing! I keep getting schedules confused and sometimes feel a burden to my co teachers although they never say anything and are patient and kind. We are hardest on ourselves most the time.
nonahope I live alone too... with daughter and grandkids close by.. they make me smile.
IntoLight thanks for the encouragement to live and do things without fear... I'm going to visit my aunt over Thanksgiving and daughter in Washington at Christmas, but have worried if these are good choices... but can't stop living and refuse to be afraid.
I'm a week into my 2nd cycle of Ibrance and it's already easier than the first... thanks to all of you that shared your experiences and encouraged me during that time of transition to this new drug and new treatment...... after fighting with insurance and special pharmacy all is calm.
Prayers and good vibes to all of you....
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Oh, boy, I thought I was losing my mind with the "brain fog" thing - so sorry you're all experiencing it, too, but at the same time, so glad it isn't just me! Does anyone know exactly why it's happening? I'd like to be able to explain it, when it happens. My husband will ask me to do something, and five minutes later, I'm asking him what I was supposed to do! And you mentioned missing nouns - it's so true for me, too! I wonder why that's so common...
My mother-in-law is 85, and she blames all of her absent-mindedness on her Gabapentin, so much so that it's become a family joke - "I forgot to do it, because my mom is on Gabapentin!" - but now I've got my own fog to deal with!!
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Add my name to the "what was I just doing" fog bank. We all get extra credit for keeping a semblance of a conversation going with the various threads going on.
Leapfrog, the more I learn about your journey the more impressed I am with your positive spirit.
Maire, your night out sounds wonderful. Cheers to putting those fears away for a night and making good memories with DH.
I just saw the Julie commercial, which I though was retired but apparently not. When I first started I/F, I would watch it and think "Yeah, right." But now I'm cycle 4, feeling good, and think the treatment is totally doable. So for those of you just starting out, it will get better.
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Hahaha I do love you girls.....you made me laugh so much PatG! I hate talking on the phone too. As soon as the person answers, especially if it's a business calls, my brain goes AWOL and I stammer and stutter and don't know where to start. Eventually I manage to get something out, enough for them to understand if they're patient!
Nonahope... I wonder how many times I've heard the phrase "Don't overdo it"!! As soon as I tell someone I've been feeling a bit better lately, out come those fatal words. When I say "how come everyone says that to me?" out comes the answer "because you DO!" I guess they're right but it's so good on a day when you have some energy to get a few things done that have been annoying you.
Memory! I now have an exercise book with those coloured sticky markers to indicate important pages where I write everything and I mean everything down. Especially at the moment, when I'm away from home, and I need to remember what I need to take home and what to leave here in my son's apartment.
Actually, yesterday morning was just a blip. I'm loving being on my own, not having to talk to anyone and being able to do things whenever I feel like it, not when it fits in with them.
Frenchhorn...the number of times I've said the same thing as you! I end up pointing at something and/or doing a mime act. It seems to work quite well. Sometimes!
Ciaci...I'm exactly the same (I seem to be exactly the same as everyone here!). They tell me where they're going and when and I have no idea later what they said and have to ask. I put it down to the same thing that happens when you're pregnant and your hormones change so rapidly. Ibrance and AIs, especially AIs, have such an enormous and fast effect on ridding us of oestrogen that it has to make a difference to our brain. We need oestrogen to function well. When you're pregnant, obviously you still have oestrogen but you have a rapid escalation of hormones that, if you've been pregnant and you remember, you get "pregnancy brain". I was as silly as a wheel when I was pregnant.
Jaylea.....I'm glad you're finding the treatment doable. So many of us tremble with fear when we're told about the SE. I know I did and I wanted to put off starting it, which was ridiculous looking back. I had some horrible bouts of nausea at the beginning but now I'm fine. I think I've learnt what to eat and what not to eat too, which helps. Thanks for the compliment. I love that everyone keeps remarking on my positive spirit but I have no idea what I've done to deserve it! But, keep them coming hahaha, who doesn't love a compliment?
Hahaha I've just had to scroll back because I've completely forgotten something I was going to say next! Oh yes, I find myself saying out loud what I'm going to do next. Along with my exercise book full of notes I find that if I say what I need to do out loud, I remember it better. Just as well google Earth can't see inside houses or the men in white coats would be turning up at the door!
I think that's covered everything but I can always edit if I've forgotten something!
Monday is almost finished in Australia. I hope you all have a great week, with good news and good memories!
See! I knew I'd have to edit! I meant Frenchhorn, not Jaylea when I said I'm glad you're finding the treatment doable! I think. I can't scroll back to the previous page now to check because I'm stuck in Edit. Sorry you two.
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I thought I'd share this. We all need a reminder to look after ourselves.
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Leapfrog, I'm especially guilty of that second one: trying to make everyone happy and to be sure that they all play nicely together. Now I'm worried that our younger son will stress out his older brother (the groom) during the wedding festivities. And these are all nice people and are 35 and 36 respectively, so not babies. I need to be thinking about shoes, not "boys". They'll all be fine. My DH just smiled and said to "stand down!!". Not something at which I find that I am good.
Pat, I, too, am losing the nouns. But, so, too, is DH, so we're laughing together about it! And I cannot remember anyone's schedule, including my own, unless I pull out my phone and check it. Pitiful.
Hugs to all, and off to freezing VT tomorrow AM!! Driving! With a car overflowing to the gunnels with table cloths, plates, and candles, etc for the rehearsal dinner. DH asked, "Don't they have plates in VT?" He doesn't get it, but he smiles indulgently through it all. I'm using Osage oranges as part of the table decor, and I'm afraid that they'll all be rotten or getting there by the time we arrive. I'll send photos....red ilex berries and Osage oranges with many votives. Either great or weird as hell!
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Joyner I'm glad you relate to it. As for me, I'm guilty of all of them!
Enjoy the trip and the wedding. You decor sounds wonderful, can't wait for photos. And, if it's not great (which it will be), weird is good. In fact, the older I get, the more I love weird.
Have a great time. Your boys will be good. I find that everyone behaves nicely around me these days since I've had cancer. They don't want to upset me! I guess it has its upsides.
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I was trying to explain to my son, who is a doctor, how bad the memory/word finding thing is. He just didn't "get it". I wish he could read these posts. He's also in disbelief about the fatigue thing.
Maybe, he's just been watching the Julie commercial!
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Jaylea...I felt the same way about our dear friend "Julie"....but, like you...I was feeling really good before I was taken off of Ibrance at 4-1/2 months....bummer! I think that's what really stunned me, as I was finally feeling almost "normal". I'm sure you will continue to feel good as the days go by. Many hugs!
Leapfrog...Believe me...when I had a "good" day, I know I would "overdo". However, I felt so much better mentally when I felt like I actually accomplished something. Even something as small as mopping the kitchen floor. Oh, and I also talk out loud to myself..."put it way", "pick it up"...!! Clutter is my middle name - and it's only me in this house! Sometimes, the pep talk works.
JoynerL...Safe travels Your table décor sounds beautiful. Can't wait to see pictures. Enjoy! Enjoy!!
Grannax.... I don't think it's just your son who doesn't get it. I think no one gets it unless they've been through it. I have very dear friends who, when I tell them what my next chemo treatment is, will say "Oh, that doesn't sound too bad"!!!! Hello!!! When I mentioned getting a wig, one of my friends said (in jest) "maybe you could borrow one of Dolly Partin's...she has 300"....so, besides "not getting it", insensitivity comes into the picture, as well. I know they don't even realize it...because, they just "don't get it".
Have a good day! I'm trying to get lots done before chemo on Thursday...not knowing what side effects I might have. This will be an "overdo" day!!
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Ciaci, yes the Gabapentin! I am on Lyrica and did not know that is was causing my brain fogs. I swear it is also keeps me from waking up in the morning. Thank god for my cats who want me to unlock their cat door and feed them otherwise I would possibly sleep 24 hours. I did 15 hours on Friday night to Sat. AM. Yes my neutrophils and WBC were tanking but I still blame it on the Lyrica and it is on my list to talk to MO about on Thursday.
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Joyner I hope you have a wonderful wedding for your son in Vermont. I do like that you call them boys. I still do but only to my DH . The centerpieces sound lovely. Hope to see pictures. Stay warm
Nonahope I hope the chemo goes well and the side effects aren’t too bad. Leapfrogs reminder that you have permission to rest is fabulous. Keep that in your thoughts tomorrow when you get home. I really like that one since I have always been the caretaker in the family.
Sometimes I think doctors and sons don’t get the memory thing because it’s not in the “literature”. With all the other side effects, pharma is glad we can’t remember too much.
The estrogen depletion is hitting me harder this time around. Suddenly the tiny leak when I cough or sneeze has become a waterfall.
Marianelizabeth, I was just complaining that I can sleep 12 hours and feel so guilty. It’s the the neutropenia kicking . I don’t take Lyrica but sometimes I just have to sit down & sleep for 10 minutes. Crazy but it happens.
I think that sometimes people don’t get it because I minimize what’s really going on to friends and family. I hear myself being positive ... at the most saying “ oh yes I’m a little tired today” when what I should be saying is “ I feel like a truck hit me”. Some people don’t listen anyway or hear what they want to hear. I am thankful I can come here. Listen to you and know you all understand because unfortunately we have similar experiences.
Sending peaceful thoughts. Maire.0 -
Leapfrog, you are so right. I have always been the family caretaker (and in many ways still am.) It is difficult for them to understand me when I have one of my "bad days" when I try to stay so positive the rest of the time. I think there is a false sense that I am doing fine on this drug, and I fear what they will do when I do break down, I am enabling them to not cope. I still make most of the decisions, do the laundry, the shopping, cook dinner, and supply the food for other meals. When I say no dinner tonight, they rally and come up with something but usually want me to help them decide what to do. I need to allow myself to rest and tell them to figure it out. They will (my DH and DD are both very capable, well-educated people). I think I don't do that because in some sordid way it means to me that I have crossed a line of no return. Silly I know, but it is how I am. I want to fight to keep normalcy as long as I can. And the brain thing? I am with you all and thankful for this site that helps me identify with other amazing people.
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At 7 pm, finally removing pajamas, only to put on fresh pair and go to bed. Next, I will be decorating my bed with stuffed animals and lots of decorative pillows for comfort. Probably will drive husband to spare bedroom. Yup. I understand fatigue.
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You all make me laugh! I've done that pajama day thing! Usually wear yoga pants so folks can't tell they are pjs
Today I'm feeling guilty for sitting down at 7pm after spending the day painting the bathroom walls and trim, making, serving and cleaning up dinner. Tomorrow is the last day on cycle 24 and my hands are numb. Could be the painting...
Thank you for the reminder that it's okay to rest. I need to get a deck of cancer cards and play one occasionally. They forget I have it most times but remember it when they want rock star parking at IKEA and want to use the handicapped sticker. (Happened yesterday).
I vote that we start a new collection of stuffed animals! I am getting the Ikea one that looks like a huskie puppy. Soft, cute, low maintenance and cuddly. I can say it's for the grandkids :
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Stuffed animals rock! I just bought an AG Bear for my grandson, but am debating whether to keep it for me! lol (It repeats what it hears in soft sounds. I bought one for my youngest son 30 years ago. He still has his but lost the voice box somewhere along the way.)
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I just want to thank you all for posting such encouraging articles about alternatives and exciting new treatments coming our way. I'm on my 3rd round of Ibrance and every now and then I get anxious wondering "Is it working?" or "How can I be sure?" My oncologist (who I trust completely) at Dana Farber doesn't do regular scans. She bases them on blood work and symptoms. In some ways I want one and in others I don't because I'm afraid of what it might show. Anyway - seeing these articles is helping relieve some anxiety and brings me hope. I'm 39 and I just feel like I have so much life to live. Thank you!!
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Amarantha, just curious about the cream you found to use. What was it? One of the tumors I have is right under the collarbone and large, pressing on nerves and hurts but hasn’t broken the skin. I had used frankensense in the past but didn’t seem to help but that was pre Ibrance. I fight the low energy, low white count blood count but it was working and I get checked at the end of the month to see how things are going.
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Grannax and others.....I'm really lucky then because my husband is a doctor and he knows me only too well. If I have one tiny ounce of energy I'll hop up and "do something" and his constant refrain to me is "rest, rest and more rest". He says the only way to fight off cancer is to let my body rest and build up. My son has learnt it from him and he's even more bossy. Mind you, as soon as they're not looking, I sneak out and "do something". That's been my constant refrain, "But I just want to DO things". My gorgeous son has taken over running the house so that I can rest as much as possible. He works from home which is a good thing but it also means his eagle eye is trained on me constantly haha and if he sees me getting up to mischief I'm in trouble! I think we all need to recognise that Stage IV cancer is a chronic illness and, even on a "good" day (relatively speaking) our bodies are fighting these nasty cells constantly and we have to give our body a chance. It's great to be able to keep up our standards but wise to let some of them go and so says a reformed neat freak. I'm still a clean freak and find it impossible not to mop the floor if I possibly can or to polish up the sink and bathroom though.
SandiBeach...I have the occasional pyjama day too. On days when I just can't get out of bed except for meals, I've been known to get up in the morning and put on clean PJs, lie around and then put on another pair of PJs and go to bed! Not very often but sometimes.
As for fatigue, I've been very lucky that only a few friends have ever said to me "But I get tired too". No one has any idea what this fatigue is like. A truck hitting you is a very apt description. Sometimes it's as sudden as that. I think there are some who don't get it but they have the grace to hold their tongues.
intoLight....it's really not for me to advise you because we all have to do it our own way and I found it unbearable to relinquish my post as the one in charge of everything but my body forced me to. There was just no choice in the matter. I hated it, I ranted, I cried, I whinged and complained for a long time. It frustrated me to the point of almost insanity but gradually I realised that my family wants me here, alive, for as long as possible and that they WANT to do those things for me that I did for them for forty years without any help. It's the only thing they can do. They can empathise but they can't actually DO this for me....live with the cancer inside me, I mean...so I've realised that it's their way of showing me they love me and want me around for a long, long time and I owe it to them to let them do whatever they want to to help me. And, although I never look at the future in a negative way, sometimes for a moment I look at the reality and I know that they will cope physically, anyway, without me if that day should come.
Grannax....how about showing your son these posts? If he's a doctor it would be good for him to gain real insight that so many of us are saying the same thing. It's not taught to them at University. They have to learn it through experience and hearing it again and again from lots of patients and that takes time.
And, yes, some friends just somehow manage to say the wrong thing. I think they try so hard to say the right thing that it would be better if they said nothing. If only they could learn that all they need to say is, "I don't know what to say to help you but I do care so much". That's all we want, not false jollity and silly jokes.
Well, that's me and my opinions for the day! I'm off to DO things!! Hahaha. Husband and son are away so not seeing what I'm getting up to!
Happy day everyone
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Girls...I've come on here, not to talk about cancer, but because at the moment I'm in need of moral support. I think my marriage is crumbling. There's been a nagging issue for the last ten years which I hoped I'd solved but I found out yesterday that it hasn't. In essence, my husband is a rescuer (he's a doctor, perhaps a lot of doctors are, I don't know) and he rescued a young girl ten years ago who needed to escape from a harsh environment at home. He's been mentoring her for over ten years but he kept this a secret from me. He's always worked long hours and been out of the house a lot and I suspected nothing. It's not a physical relationship; it's become a co-dependent one. He neglected me because I was always self sufficient and didn't need a rescuer and I've never had a victim mentality. When my cancer was diagnosed it changed everything. He found he could no longer spend hours away from the house because I became physically helpless due to the BMX and bone mets worsening so he brought this young woman (aged 32 by this time) to our home to "help look after me". I knew nothing of the previous situation but gradually she leaked it out to me and I discovered that he'd been more of a father to her than he was to our own son, who he also neglected. This is why my son and I are so close. After a short time, my son fell in love with this girl; she's very beguiling. She broke his heart. His father still wanted to keep his own relationship with her, however, causing further pain to our son. This girl works for him (or did). For my son's sake I told my husband he had to get rid of her from the workplace as our son also works there and had discovered that she has not been doing any work for the past ten years, or none to speak of, and he discovered that she had not been submitting forms to the Taxation Department and other serious problems that could have led to criminal offences. He still refused to sack her. She comes from Singapore and, for the first time in our long marriage I gave him an ultimatum; either she went or I did. I hated to do it but I had to because she caused so much trouble in our family life for ten years and I'd only just worked out that she was the reason. Now, while they're in the US on business, I've found through her messaging me on Facebook, that he hasn't sacked her and that she will be coming back to live in our investment house rent free, as she has for the last three years, and that he will employ her again despite her serious misdemeanours. I'm sorry to pour all this out. I'm not sure if it's allowed, Mods, and if it's not feel free to delete it but I am so sad and broken at the moment and you all know that I'm normally positive and happy that I need you girls for support as I've come to count on you as friends. I'm finding it hard to eat and sleep. While they're away, I'm staying in a small apartment my son bought when he thought he would leave home but, when I got sick he stayed at home to be my carer, as I can take care of myself easily here. I intend not to go home when they get back at the end of this weekend.
What I need to know is am I over-reacting? I don't think I am. I've been a devoted wife for forty years and he's always had a protegee like this but he's never been co-dependent before.
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I have typed a msg twice to you thru private msg but can't get it go thru. Will you private msg me so I can send you a msg. I can't figure what I am doing wrong to get it to go thru. This is for Leapfrog.0
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airlinegal...I've just sent you a PM
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