Ibrance (Palbociclib)
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Hi everyone! Sorry I’ve been MIA for a while. We went to Utah for Christmas, got sick, and now back home trying to recover. I’m thinking that I can’t be around more than just a few people and I need to mask. My sister’s stepson, his wife and their five-year-old daughter were there. The niece was sick, and I think we caught it from her. My sister and I talked yesterday, and decided that next Christmas, they’ll have the kids there and we will do Christmas at another time. I think it’s more important that the kids keep that connection. My niece felt horrible about getting me sick. Of course, I felt bad that she felt bad…
Brutersmom, what a pain with your drier! I hope it comes sooner (although I’m late with this comment so hopefully you have it already.) Love the flamingo blanket! You family sounds like mine!
Aprilgirl, beautiful tree. I’m glad you mentioned “former” Ibrance users. I thought about leaving the group, but I’d miss you all too much!
The latest with my treatment is that we’ve been waiting for the insurance to approve the radiation, which they kept saying was not approved, not a standard of care, or whatever. I finally got a voice mail on Saturday saying that my “requested service” was approved. Of course, the call back number is only good M-F, excepting holidays. I guess I’ll call on Tuesday to get the radiation scheduled. Once that’s completed, I can begin the new oral medication, Truqap. I’m also submitting blood for another genetic testing.
I love coming here and catching up with everyone, even if this is the club no one wanted to join.
I hope everyone has a safe New Year’s Eve, however you choose to celebrate. No big plans here. Will be in bed long before midnight.
Love and hugs,
Carol
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@sunshine99 Sorry to hear you were sick. Happy to hear you got your insurance thing worked out and can move forward. Sounds like you have had a very nice Christmas even though you got sick. A lot of bugs and stuff going around right now. I do Christmas eve. This year was interesting. One person stayed home because the were ill with a cold. I appreciated that. My dryer never came. Fortunately I have hot air heat and most of my vents are under windows. Since I only have woods behind me and no curtains it has helped. Ceiling fans are great for drying sheets. Learned my wet fitted sheet goes on so much easier then a dry sheet and is smoother when dry.😆
I am now counting the days until knee surgery. Final blood test Tuesday. Praying my neutrophils are above 2. I am also hoping 2024 brings better health for my husband and myself. It has been a rough year.
Wishing you and everyone in the group, a Happy New Year and a better 2024.
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Happy New Years to all of you !
@sunshine99 - I'm so sorry you were sick over your Christmas visit to see family . I am happy to see your post and glad that @brutersmom did a shout out to check on you .
@brutersmom , hoping your blood work is good for your upcoming surgery ! Keep us posted .
We went to a small friend gathering last night and are having a quiet New Years at home . My son goes back to the dorm tomorrow , his holiday break sure went fast !
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@aprilgirl1 fingers crossed. I have been off Ibrance 5.5 weeks it should be up over 2. I am being optimistic. I am counting the days. The rest of the things I needed have arrived. I got elastic shoe laces for my sneakers so I can slide them on and off. I have a high bed and I have been struggling to find something appropriate. And under $200. On Thursday when I was at the gym it occurred to me that one of the steps would be the perfect height and width so I ordered one from Amazon. I can also use it for leg exercises before and after surgery. 😀😀😀😀😀
Wishing everyone a happy New Year!
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Brutersmom, I never knew that wet sheets went on easier than dry ones. When is your surgery? I will pray that your ANC is above 2. BTW, I got some Stride Rite shoes on Amazon. They slide on, but still have enough of a heel that I don’t slide out of them. Tying laces is out of the question for me.
Aprilgirl, I’m glad you were able to visit with your son.
Happy New Year, everyone.
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@Sunshine99. I always dried my sheet in the dryer then fought with the mattress to get them on. Sometime with the help of marbles, the crazy cat.
I have on sneakers. The came with elastic laces that eventually broke. Easy to slide on. I have been using regular laces since. I bought new elastic laces from Amazon last week. I have them in but I didn't tie off the left foot incase I get swelling. I will do that after surgery. I think I am also going to put them in my Brooks to.
Surgery is next Monday. Still have stuff to do. Blood works is tomorrow. I will post when it comes back probably after 4:00.
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Good news. Neutrophils are at 5 and white count is up as well. Red count is still low and so is blood sodium. I don't think they will interfere with anything.
I am curious do any of you have issues with low sodium. Also, I am a little puzzled whe my red count did not come back up.
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Hooray for the good neutrophils. My sodium is always low. No idea why.
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@brutersmom , great news on your neutrophils and wbc count ! I don't think I've had low sodium.
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@brutersmom Neutrophils at 5... and good WBC.... that's fantastic!! I had low blood sodium about 6 months ago, which shocked me coz I thought with my hypertension that's not possible. Could this be an Ibrance thing??
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@brutersmom, excellent news about the neutrophils.
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brutersmom, my sodium was high when I was in Urgent Care with vomiting and dehydration after I couldn't swallow the Ibrance tablet. I seem to remember my ketones being off the chart high, too. It's been fine ever since. I did have some high liver enzymes briefly, but I attribute that to taking Tylenol for body aches when I was sick at Thanksgiving.
I keep an Excel spreadsheet with my bloodwork and have since 2018. I know, I'm weird. I do like to see the trends, though.
I'm glad you're getting closer to your surgery date and hopefully nothing else will come up!
(((hugs)))
Carol
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Brutersmom - I take Verzenio and not Ibrance, but I read here off and on, since they are related drugs. I have had chronic low sodium since last summer. I started the Verzenio last May. Some Drs I've seen have been concerned about it and others haven't. My onc says he's not concerned about the latest low ( but not super low) sodium number. Interesting though, that you also take Effexor. My onc wrote me a prescription for it about a month ago. I got it filled, then read the handout from the pharmacy,and declined to actually take the drug, as the handout noted that it could cause " low sodium and balance problems". I have yet to discuss it with the onc. Since Ibrance is similar to Verzenio, it might be causing your problem, but looks like the Effexor could too. Just my take of course, as I'm no expert.
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Thanks everyone. Got the all clear
Good from the surgeons office.
@Rosebessie my sodium is low and my blood pressure has been very high. Fought with the Dr back in July to adjust my meds.
@threetree my blood pressure is hi and may sodium is mostly low occasionally goes up. I had been taking a diuretic when diagnosed they made. Huge deal out of it. The nurse in the hospital were upset because it kept dropping but the had me on a restricted sodium diet due to my blood pressure. What did the doctor prescribed the effexor for. I take it to counteract some sever side effects of letrozole. There might be alternatives. Without effecor I could not take estrogen blockers.
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Brutersmom - My onc prescribed the Effexor for general lowered mood and anxiety. I thought I'd be willing to give it a go, but ultimately decided not to. Not only was there the low sodium and balance problem side effects, but I've also used a "happy light" for years, along with taking Sam-e for mood and joint problems. They've been fine and I really see no reason to change that out for Effexor. I think the onc was picking up on my every fall and winter lower mood, dragging, etc. and wanted to help. It doesn't matter whether I take something or not, I'm just always more down this time of year.My blood pressure is in the normal range, so one Dr told me to go ahead and use salt (I usually don't) on my food and that it might make a difference. I'm doing that more these days, so will see what labs late next week look like.
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@threetree my blood pressure and sodium became an issue when I was in the hospital. Effeor was started later. It doesn't seem to have changed the number.
I would probably not use effexor for what you describe.
Even though my sodium is often down around 134 I was still told to avoid salt and not take diuretics. That was a year ago at diagnosis. Today is my one year anniversary of stage IV. My bp was running 159 and higher over 85 and higher. My PCP took a wait and see attitude. It never came down. No added salt avoided processed foods. Sodium was low mostly bouncing around occasionally it came up to the bottom #.
Since they just added hydoclorothizade back in, I have decided I will add some salt just to be safe. I have feel like sometime they don't look at the full picture. No one seems to care about my low sodium only potassium.
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brutersmom, I think I mentioned that I track my bloodwork numbers. It's interesting what my team comments on. I have some numbers that run consistently high and others that run low. Chloride is often high, Anion gap runs low, lymphocytes run low. MO never comments on them and Dr. Google isn't much help either.
I guess if were cause for alarm, I'd hear something. My high liver counts resolved after I stopped taking high doses of Tylenol when I was sick.
Keeping my fingers crossed for your upcoming surgery.
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Sunshine99 I tried to print out my information from mychart and it shows up weird. Plus I have to print everything. I am going to steal your idea.
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Steal away, brutersmom! I'm kind of a nerd with spreadsheets. They make me happy. Everything is neat and tidy in its own little box—unlike the rest of my life which I feel like is in chaos! hahaha
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Brutersmom, in your pocket for a successful surgery! Hoping it goes really well and that you will get significant pain relief.
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Brutersmom, hope that you have a successful surgery and a quick recovery. We are all rooting or you.. You've waited long enough.
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Thanks everyone for the well wishes. I rushed around getting everything before the weekend because of the threat of snow. Dryer came yesterday. They forgot to call me about a delivery time. I called Thursday night and they told me between 1 and 4. I couldn't be home till about 1:30. Came at 2. Yea I could do laundry. It is snowing now. They first said 5 inches then said rain mix. Now they say whatever it feels like. So crazy. I have seen 22inches of partly cloudy in my time. This is the fun of living on the line of 2 very different weather systems near the Mason Dixon line. Except for running to the store tomorrow I am pretty well set. Funny but I am starting to get nervous. I have been so looking forward to a light at the end of the tunnel. Now I am beginning to think, what if. Like will letrozole keep the bone from healing properly. What if the joint doesn't fit right. What if I am allergic to the metal they use. Well if I go shovel my drive way later I thing the pain afterwards will take care of the what if's. Maybe snow is a good thing. 😆😆
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brutersmom, give equal time to thinking, “what if this works out?” What if your recovery goes pretty smoothly and what if you begin to have less pain. I get the part of worrying because my mind goes there, too. But we can give equal space in our thoughts to what if we experience good outcomes. It helps to be openminded. If there are issues along the way, you will deal with them. Wishing you all the best!
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You are right. I got busy and put everything on the back burner. I asked a question on a Facebook sight about what to wear to go home. And people started telling me all sorts of horror stories and I panicked. Since scheduling this I have felt positive until I read all those awful things. I have worked hard to go into this surgery with strong muscles. Every thing I read says I should do well.
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Happy New Year everyone. I haven’t checked in for a bit. Holidays are so busy. All of my kids and grandkids got Covid and flu vaccinations. It all went very well. I think my son in law picked something up on his plane ride home after New Years. Brutersmom good luck with your surgery. It sounds like you are all set. They are so good at these procedures nowadays. Sending you good wishes.
My Ibrance journey has gone on for a year. I am on the lowest dose. My ANC drops to 1.1 at the end of my cycle. I go to a different doctor in Florida in the winter. My doctor here held my Ibrance. I don’t think my other doctor up north would have done that. I have been getting some weird vibes from this doctor in Florida. She is very authoritarian and abrupt and definitely overworked. I have decided to take my care to a larger cancer center in Tampa - Moffitt. I am hoping they do more than cursory checks and PET scans. If I am not mistaken it seems some genomic testing should go on at some point. I am hoping they will offer more comprehensive care. My decision came after I took my daughter with me to my last appointment. She deals with many doctors, as she has a son with SMA. She advised me to switch, as this doctor has no time for discussion or explanation. She confirmed my opinion. Here’s hoping!
I am back on the Ibrance as my ANC went back up promptly. The only side effects I see are a very acidy stomach when I eat sugar or spicy foods, and some tender mucous membranes at the end of my cycle. I would love to hear from anyone who has been on Ibrance for a long run. Hi to everyone.
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Thank you gigil. Glad you had a nice holiday. I am as ready as I can be. I have been on Ibrance for about a year. I am going to start 2 weeks on 1 or 2 off. After everything is healed from surgery. My ANC drops most likely to .5 or so. It takes to weeks to come up. It took 5 weeks to get my ANC up over 2 two have surgery. Fortunately timing allowed that 5 weeks. I am slow to come back up and I keep getting sinus infections. I will be heading for surgery at 6 tomorrow. I will post when I am coherent again. 😁
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Brutersmom, I hope you get a good night’s sleep tonight!
(((hugs)))
Carol
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@brutersmom Hallo. I've been MIA a few days so I'm just catching up. I really pray all goes well. Please try and keep those fears away. I'm like you, I spend too much time inside my head worrying about the "what ifs", so I feel you. But it's never as bad as our fears. I look forward to your updates after surgery. Sending love, hugs and positive vibes.
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Brutersmom-Praying that you have a successful surgery today and a smooth recovery.
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brutersmom, thinking of you today. Hopefully you're already drugged and under and will wake up pain and nausea free.
Carol
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