Ibrance (Palbociclib)
Comments
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Joyner, can't wait to see more pics. The tables look wonderful. My son wouldn't let us (or her parents) help with anything. They wanted to do everything themselves. Nothing makes a parent happier than the happiness of a child. The glowing at each other is so amazing to see. But there were several moments, including during the speech by his best man, that I was saying to myself, "who is this person and what did they do with my son?"
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Joyner, it is so beautiful! Nothing but happiness when you see your Ds happy! Can't wait for more pics.
It is a gorgeous day today and I am sitting on the front porch soaking up the beauty! Hope every one had a lovely weekend!
Hugs and prayers, Claudia
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Joyner, you are very talented. I would have never thought of that centerpiece.
I am not a fan of Komer either, but at least someone is doing something. I walked down to the park today to see what was all set up for the walkers (my husband's idea and it is my usual walk anyways). Besides a water and snacks tent, there was even a hot pink fire truck! This thing is out of control!!!
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Joyner. Just lovely pictures. It’s the best feeling to see your son happily married.
I’m still checking in on these boards. I’m too fond of you all not to check in. Blessings for Thanksgiving
Maire.
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Crap, I hadn't thought about how my treatment might affect massage therapists. I choose not to disclose just out of privacy. They wash their hands, I've got to think they're ok. As for sex, my hubby will gladly risk it - ha!
Joyner, thanks for sharing those lovely pics. I actually didn't know what an osage (is that right) orange was, but it is beautiful. Look forward to more from the ceremony.
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Maire....I'm going to miss you so much. I've always felt that a calm exudes from you and your advice is always valuable. I really hope everything goes well for you. Perhaps just a teeny little post every once in a while to all of us who love you? Or is that not allowed?
Nonahope...So glad you're staying. I've become very fond of you as well and it wouldn't be the same without you.
Sweetside...thank you for taking in my advice and reminding me of it.
JoynerL...the table looks fabulous and I'm glad the wedding was so happy. To see your son and daughter-in-law creating that wonderful memory must have been very moving.
JoynerL....I've been told Ibrance is targeted therapy and not chemo but that it has some "chemo like" side effects. I've been known to be wrong before so I won't be too dogmatic haha but it IS strong and has had some wonderful results. So much so that the first trial of Letrozole and Ibrance had to be stopped before the end because it was a double blind study and the ladies on Ibrance were doing so much better than those on placebo that the trial could not be continued. Which I take as enormously encouraging.
Amarantha....thanks for your encouragement, as always.
Actually, things are looking good from my perspective. My husband and son are still away but, while on a stopover in Frankfurt my husband read an email I'd sent him in which I explained my position ~ that I still love him but I want to be in charge of the direction I take in life now and that I'm enjoying being independent. (They both know what the loss of my independence has done to my state of mind and how important it is to me). That at home I'm a semi-invalid yet here I feel like my old self and have regained my self confidence. My son and I had a chat on Messenger and he told me that they both understood my feelings completely and, rather than try to find a bigger apartment in a very tight market they would help me to make this one more workable and they will make a start on it as soon as they get back, which is tomorrow. I have all sorts of ideas which they agree with implementing. I'm happy about that as I like this building; it has positive vibes and I don't really want to have to pack everything up and move at this stage of my treatment. There's a small supermarket next door and a cafe next to that and a cafe on the other side of the building, the owner of which has an arrangement with me that if I'm not well enough to go and collect a meal on days when I don't want a heated frozen meal, I can text him and he brings it to the lobby for me! I feel at peace with this arrangement but I have a feeling that I'll probably see more of my husband now that I'm living here than I did at home. He's like that...... Thanks everyone for your input. It's been good to talk it out. And, if I change my mind about living here I can always go back home, a bit like a runaway teenager! This is not set in concrete.
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Oh, Leapfrog, it sounds as though you have sorted out a wonderful solution with which you and your husband and son are in agreement. And, as you said, it's all reversible if you chose to go home. The smaller apartment near the market and cafes sounds perfect. I want to come move in with you! Well done, my friend!
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Thank you JoynerL. you can come any time but you'll have to share a sofa bed (with a mattress on top of it) which is only a double bed size! I'm sure we'd do well!
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I've just remembered a tip I was given by a doctor. I'll put it on this thread but it would also apply to anyone having chemo whose immune status is severely compromised.
I've been reluctant to go anywhere that I might pick up an infection because my neutrophil count is always very low. This friend told me that he's recently been on a trip around Europe with his wife and stepdaughter, where the flu was rife. He tried putting a smear of Bactroban ointment just inside his nostrils whenever they were out and about and, although his wife and stepdaughter both picked up a nasty virus and were very sick, he remained well throughout.
I've taken to using a cotton bud and doing the same thing. I'm not sure whether you're familiar with Bactroban in the US as I don't know whether it's global or has a different name but it's an antibiotic ointment. Just thought I'd pass it on.
Those having chemo who are on those threads might like to pass this on. I'm not familiar with chemo threads.
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Yay Leapfrog ! I love your solution ! this makes me happy for some reason. Yay yay yay !
About avoiding infections and stuff, how many of us have gotten vaccinated against the flu and pneumonia ? After a bad bout with pneumonia this summer I got innoculated, and I guess I had a flu shot too. In any case, I was able to fly to California, visit my parents in their foggy town, sing a concert, then fly back to France, rehearse heavily for another concert sing three weeks later, all without getting sick !! It used to be just a flight, or car trip, or visit parents, or sing a concert -- any one of those things guaranteed me getting at least a horrible cold, if not the flu. I guess I can thank the innoculations, or just ironic luck ?
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I had my MO appointment on Thursday. It was interesting because I had several things to discuss. The nurse did help me send in all the samples for the MBC Project. Then I asked about Foundation One testing vs Caris. She seemed to get a little defensive about me asking. That did not feel good to me. She did order testing w F1.
Also, she wants me to go to this exercise program. It's free for 4months to patients in TX. I went once and it was too much for me w all those machines. I've had major neck surgery, as a result the rest of my spine has multiple herniated and bulging discs, etc. Anyway, she was very pushy for me to do it, no matter what. She's usually very empathetic. Now, I'm feeling pressure to do that program even though I don't think it's right for me. Pressure on top of pressure. MBC and TX, that's enough pressure on its own. Now, add exercise program that would take two three hour round trips a week. I also have diabetes and had to add a new medicine this week it's not insulin but it's an injection.
My word finding and brain fog seems to be worse. It's not listed as SE of Ibrance/ Femara but everyone who is on it says they have it. My friend said well we're all getting that at our age. I said but not all the ladies on it are our age. Grr. Then there's the fatigue that s a well known SE, but it's not supposed to interfere w exercise program! What?!?! I don't get that.
What I want to do and have been doing, is focus on Christmas and kids. That brings me joy. I'm also going on a short road trip with my daughter, have my brother and sister coming down to visit in 2 weeks then three family/ friends Christmas parties.
So, think I'm going to have to be bold and firm in my opinion that this exercise program is not for me. If it's causing me so much stress and pressure to even think about it, I don't need it. I'm not very disciplined w exercise but if I could walk everyday, I think that would be a better compromise and reduce the pressure I'm feeling.
Do any of you feel this kind of pressure, too?
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Good morning...
Leapfrog...It sounds like a perfect arrangement for you at this time. I'm happy things appear to be working out for the best for you and your family.
Grannax....I refuse to add unnecessary stress to my current situation. I would refuse the exercise program, as well. Do what makes you happy and comfortable. Maybe, after the holidays, you might feel like doing the program. Until then, stand firm and enjoy your family gatherings. As for a little bit of exercise, Leslie Sansone has some great walking DVDs....I have several of them and use them "when I feel like it"....it might be a thought for you. They are very easy on the joints and I do feel like I accomplished a bit of exercise when I do them.
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Nonohope. That sounds like a good idea. Do you watch it while walking on treadmill? I don't have a treadmill. But, maybe I should look into getting one.
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I don’t post much but read every day and I need to vent. I made the mistake of going to brunch with my entire family down at the beach yesterday. As we were leaving walking down the boardwalk the pink ladies in a group decided to stop us and make us do a chant with them. I have kept my diagnosis a secret so my family was mad at me that I wouldn’t sing along with them. Here’s the best part one woman comes up to me and wants to know why I just stood there and stared. I told her how much the ceo of komen makes and very little goes to research. She was so mad and we almost had a fight. I’ve never been in a fist fight in my life, but this was the closest I’ve come to punching someone. I respect what the walkers do I know I’m jealous of them I just wish they would educate themselves a little. Thanks for letting me vent
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Grannax...No, the DVDs cannot be done while on a treadmill. I hate treadmills, by the way...LOL They are "walking" tapes you follow by watching the DVD...walking in place, along with some mild hand weights etc.
Ally...I'm with you 100% regarding Komen.
Hope
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Joyner and Jaylea, I read this on the OncoLink website about Ibrance:
"Storage and Handling
Store your medication in the original, labeled container at room temperature and in a dry location (unless otherwise directed by your HCP or Pharmacist). This medication should not be stored in a pillbox. Keep containers out of reach of children and pets.
If a caregiver prepares your dose for you, they should consider wearing gloves or pour the pills directly from their container into the cap, a small cup, or directly into your hand. They should avoid touching the pills. They should always wash their hands before and after giving you the medication."
So, not a pillbox from Pfizer? Ha! Perhaps those of you who suggest it needs to be kept separate from other meds in a pill box are correct. I agree with the handler suggestion though that they shouldn't handle it. It makes no sense that I cannot touch it since it goes inside my own body anyways. I am on cycle 18 and touch it daily without any problems. And I am careful to not let my 2-year-old granddaughter use my bathroom.
Grannax, pooh on your Dr for adding to your stress! Sounds like another Dr who blames you for weight gain when it is a clear se of an estrogen blocker. I eat only about 1000 calories a day, most of them healthy, and still gain weight. I also walk when I feel well enough which is almost daily. Do what makes you happy. A gym does not work for me and a treadmill is the worse thing as it makes me too tired to function after and does not improve my mood during. But I can enjoy a walk around the block or through a mall. I don't swim as our condo allows small children in the pool and hot tub so it is not controlled, but I do swim in the ocean when it is warm enough. (It is going to be 80* here in San Diego this coming week so I may walk in the water this week!) I admire all of you who add additional exercise to your days. These days, creating happiness is more important to me than extra pounds. It is when you lose weight too fast that you need to start worrying.
I pray everyone here has a peaceful Sunday full of many blessings. Now it is time to Christmas shop from my recliner! lol
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Here's my theory on the not using a pillbox rule. I have four pills in each day of my pillbox. I keep track of which is which by shape, size and color. If this kind of distinction is tricky because your pills look similar or you tend to forget things, you could get the $500 Ibrance pill mixed up with a 50 cent vitamin (or whatever). Not a good idea. The caregiver hand washing is to prevent you from getting an infection from them, not to protect them from whatever. The Pfizer site has nothing about any of this. They just have the safe temperature range. I'm keeping my pillbox with my four pills, including Ibrance.
We want more pics, Joyner.
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Grannax2, please don't let anyone put pressure on you to do something you don't want to do. It's so easy for a perfectly well person to have great expectations that you can do an exercise class. I couldn't do an exercise class if they were passing out thousand dollar bills!
Wow, people, I've never been told all the Ibrance rules! The toilet flushing one is the oddest. Who touches that water?
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Morning, all. Janet, I decided that I wouldn't take my phone to the wedding, as I didn't want to miss things while hovering behind that blasted phone. There was a photographer there, but those won't come back for a while. I'll post some as soon as they appear....can't wait to see them!! I think that some of the Vermont folks thought that we Virginians, with our odd accent and slower speech, were from another planet, but it was all such FUN! I find that my accent gets thicker in such situations! PatMc, does your, too? Memphis is bound to have the same effect! My brother, in his toast, made a reference to traveling "above the Line", for those who are history buffs! I don't know whether those Millennials got it or not. They laughed, anyway.
And Pat, loved "Notcher" and your posting about Mt. Sinai...bring it on!!
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Leapfrog, I am very happy that you are in a good place right now with this situation! I would love to have a grocery store and 2 cafes right next door. Ours are at least a fifteen minute drive, and sometimes I am too tired to even think about driving anywhere. We dont even get any restaurants that deliver to our house! The price you pay for living in the country. However, the beauty here and having my horses cant be beat!
Hope. I agree with everyone else, do not let that nurse bully you. Try to walk for at least 20 minutes a day, if you can and see if there are any yoga classes in your area. I can get them for free at cancer center, but that is an hour drive each way. There is a store for breast cancer patients and their special needs, that offers a free yoga class for bc people once a week. It is paid for by ACS. Maybe there is one close to you. I find the restorative yoga is helping me to feel stronger. I also think the comraderie with other's is good, even though Iam the only mbc'er.
Joyner, we are waiting, most impatiently, for more pics! I just love weddings, they always make me cry happy tears!
Hugs and prayers,
Claudia
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Good morning...
Claudia....That was Grannax with the crazy nurse...not me. I think we all know what we are capable of doing when it comes to exercise. I suggested the Leslie Sansone dvds for her to try. Very low impact and about 20 minutes long...perfect for getting a little bit of exercise back into our lives.
JoynerL...So looking forward to more pictures of the wedding.
Hope everyone had a great weekend.
Have a great day!
Hope
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Nonohope. It was actually my MO who said all that!!! I watched Leslie Sansone video on U tube. I think it will be great. I think it's doable for me. So I looked on line and there are a zillion DVD's. Which one do you have or like best? There are some for seniors, some for 30min a day, some w party songs?, some say aerobic some not. If you have a favorite, let me know please.
?
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Grannax...I have several of the DVDs. I would start out with the easiest, if I were you. I love all of the ones I have. I have one that has a 1 mile, 2 mile, 3 mile walk on the DVD...I use that one a lot. It's one of the older ones. I think you will really like "walking" along with Leslie!
Hope
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Sorry NonaHope...brain fart! I ant to wish everyone a Happy Thanksgiving and tell you that one of the things for which I am so grateful this year, is all of you! You have kept me well educated and sane this past year and for that I am eternally grateful! Have a wonderful holiday!
Hugs and prayers,
Claudia
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Joyner, I didn't bring my phone to any wedding events either. We waited...and waited...for the professionals photos. It was worth it. BCO doesn't allow anything bigger than 10 Mb to be posted and it took me a while to find the one I posted. I'm looking for another. Maybe that will keep the peanut gallery appeased until yours arrive.
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Hello Ladies,
I've been on Ibrance since June. Still taking 125 and faslodex. I had to miss a week here and there due to radiation and low blood counts. There's a chart that they have so if the blood count goes that low they take you off and if it's chronic they can reduce the mg of Ibrance.
Yesterday I had a weird experience with Ibrance. I ate took the pill drank water and burped and it looked like white smoke came out of my mouth. Did anyone ever experience anything like this?
Years ago when i had chemo I was told to double flush and I did it. My urine (sorry ladies) was discolored and my children were younger and we were afraid.
Have a good time with your families ladies.
Take Care
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Oh, Joyner, I'm originally from Birmingham...way further South! When I worked for a Minnesota company and joined the group in conference calls from home, I could almost hear the snickers, especially the day I told them we were fixin' to start a project! But I'm proud to be from below the line (most days).
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Tanya, several people have reported here that they burped smoke. You could turn that into circus act!!
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Janet, the photo is GORGEOUS....beautiful children! Which is yours (though they both are now)??
Pat, got it on Birmingham and the accent and fully in agreement on "the line"! Both ways.
Tanya, yes, I have burped "smoke" twice. Most disconcerting. I cannot find any rational explanation for that, as I drink lots of water to be sure that the capsule gets fully down. It must be a thin capsule which dissolves quickly. So far, no problems. One person on the string said that Pfizer was aware of this occurrence, but my Pfizer nurse didn't appear to have ever heard about it. I haven't remembered to ask my MO about it but will do so.
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Burped smoke ! wow that sounds freaky ! Okay, I'll watch for that, could be exciting. I'm on my first break from Ibrance after the end of my first three weeks. I actually think I can see an improvement. It would be too soon to be true, right ? Can three weeks already make a difference ? I'd swear that the skin of my left-ex-breast --where there is a big red rash of skin mets -is less cardboardy, and the places that were permanantly scabbed are now healed ! The whole site has a long long way to go, but I'll take any encouraging signs I can get !
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