Ibrance (Palbociclib)
Comments
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Joyner, thanks for the concern. I had already called Gene from the parking lot to make sure he was still a port person. These other patients my nurse told me about must have been unlucky in getting John, who fills on for Gene at the hospital when he is off. But, John is the tech at the other sites where this mobile unit goes. Or at least at some of them. I wasn't hot either. They open the doors to the other rooms (three rooms on a bus, they call it a coach) and the other rooms are standard medical freezing. I had a blanket on during my scan and was not hot at all. The temp among the rooms balances out and probably ends up being ok for the scanner. I'm just glad it is over. Such a tiring day. I spend the whole time in the machine thinking about what I'm going to eat when I get out.
When I left, Gene slipped me a piece of paper with his boss's name and phone number and said, "Call him!"
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Well done, Gene!!
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jaycee49: Good that you sent your letter. I think you would be surprised by the lack of feedback from patients who use the company's equipment. "The squeaky wheel, etc."
I had numerous unacceptable experiences at a hospital in Wickenburg, Arizona. I finally sent an email to the CEO of the hospital. I figured the letter would just allow me to "vent" and did not expect any action. Well, 45 minutes after I sent the e-mail, I received a reply from the CEO which outlined the actions he was taking to remedy my issues. Since we were snowbirds and have no returned there I am not sure if that worked out or not but I was prepared to meet with him if it did not.
Keep us updated on the results. These issues are important and many times go undetected by someone who can help.
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Wandering, she's already missed your 45 minute person. She's in Chicago directing how we bumpkins in New Mexico get treated. I don't expect much. I hate talking on the phone but will call the local person because Gene is such a good guy. He can't call about it himself because John is his coworker. He wouldn't do that. He's too nice. I do not suffer from that affliction.
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Wow!! I have been busy the last few days and I am getting caught up on all the posts!!!
PatgMc- your post from 2 days ago made me cry--in a good way. I thank my Lord and Savior for all things. Thank you for your post!! Also, congrats for the good report!!! Way to go!!!
Wandering-- I read you are from a rural community. I am too. My town is smaller than yours---we are about 18,000 people. Is your MO in your town? Or do you travel to see your doc? The reason I ask is so many post about going to large research facilities. And I am concerned that we who get treatment in rural areas may not have access to the current treatments.
Now for an update on me and, yes, more questions.
I just came from my MO appt. My ANC count is 600 2 weeks into this Ibrance cycle. We are continuing the med, but my MO reiterated this is moderate neutropenia and to look out for symptoms of infection and call immediately if I get sick. I know we have said on this site that our infection risk is low with Ibrance, but it makes me wonder what it is doing to our bodies to live with such a low count all the time. I guess the lesser of 2 evils. My CA 27.29 went up 14 points from last month, but the CA 15.3 went down 4 points. QUESTION----I know the numbers can fluctuate but why one up and the other down?? Wouldn't they both go in the same direction---if increase/both increase, if decrease/ both decrease?? We will recheck them in 1 month and I am due for a CT in July ( every 3 months ). The concerning news is my MO is leaving at the end of June and I will change to one of the other docs in the office. I will meet her after the CT is done, middle of July. Back to the discussion from above about rural communities---- my new MO works part time. She has a new baby. I am concerned that living in a rural setting and seeing a part time doc I may not be getting in on the newest advancements to help me. There is a larger cancer center about 100 miles away ( one way ). QUESTION-- Should I go there??? How do I research which MO is best and where I could get the latest news coming out for MBC so I can get the best care?? How do you know one facility is better than another for MBC?? I loved my old MO, and I think he was very knowledgeable. But we never had a discussion about my F1 results or discussed things that are talked about here ---- one drug vs another and how they work, genetic mutations that can occur, etc. I feel I have to educate myself. This site and you all are great for that. But some of this is over my head.
I wish I lived closer to Sloan Kettering or Mayo, but not all of us with MBC live in metropolitan communities.
IS THERE ANYONE ELSE OUT THERE LIVING IN SMALL COMMUNITIES AND GOING TO SMALL TOWN MO'S?? How do you make sure you are getting the best care?
All for now.
Best wishes all.
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Neogirl I have been taking letrozole/Ibrance since 9/2017. I have had hair loss, about 30% of my hair, not enough to wear a wig and most people don't notice, (at least they don't say anything, LOL). I am considering getting it cut because I see the difference. However it seems to have slowed down quite a bit.
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PatgMc, doing the hand jive and throwing in some extra exclamation (extra-mation if you will) marks for your good news!!!! Glad to hear you and MO synched up on your dosage and schedule.
Janet, good on you, girl, for being a voice for others. God help them if they tick you off more...
Candy, can you use your local MO for routine follow up and use the larger center for when and if your treatment changes? I'm a suburbanite so can't really offer advice. Thinking of you and praying that you come up with a course of action that gives you comfort and positive results.
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Candy 678: When I listed the town size at 40,000 that is the closest "major" city. We don't actually live in a town - nearest loaf of bread is 30 miles away (round trip). When we were snowbirds, I started going to Mayo Clinic in Scottsdale. After looking at my labs and reports, she recommended the same medications as my oncologist in Helena. This gave me a lot of confidence in my oncologist in Helena and provided me a second opinion. I did change doctors in Arizona since the oncologist at Mayo was not interested in my case - no tumor markers, last time there no labs - just shots and goodbye. Sometimes we don't have a choice of doctors - my oncologist in Helena is the only one in our area - I think he is really good fortunately. We are no longer snowbirds so I am getting continuity of care in Helena. Do what you feel comfortable with - if a 200 mile drive gives you comfort with your care - make a trip/vacation out of it and enjoy.
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Here's to you, jaycee, for sticking up for yourself and others! After being told for years that my port couldn't be used for the FDG injection, my radiology facility started using a nurse to do the sticks. I'm a difficult stick too so I asked if we could please access my port for the scan. She asked whether I had a Power Port or a regular one and I had no idea. She checked it and saw the little bumps on it and declared it a PP! What a thrill! We've used it every time since then.
(They keep my facility really cold but there's a blanket-warming machine and they keep covering me with fresh ones. What a treat!)
Unfortunately, when I had the scan Monday my port wouldn't give blood for the required Creatinin (sp?) & Glucose tests but it would accept the saline (and therefore, the FDG). The compassionate tech stuck my finger for the Glucose and decided we'd just forego the Creatinin check. I thought I'd cry with relief! My port wouldn't give blood again at my appointment yesterday but the phlebotomists got all they needed with two sticks of my arm. I like that nobody gets to stick you twice there. I didn't stick around to figure out what was up with the port as I needed to get out and celebrate!
I pray that your letter shakes things up. jaycee!
Thanks for the advice on taking Claritin for the XGeva experience. You guys had told me that but I always forget. Next time!
Alert!! WTMI of the day: I'm sitting here munching prunes as a recent craving for cheese has left me uncomfortably constipated. My oncologist always asks me if I have diarrhea but Ibrance actually has me pooping rocks most of the time. [End of WTMI]
Happy Thursday!
PatG
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Wandering, your mention of Wickenburg, Arizona gave me a moment with the Eagles..."standing on a corner in Winslow, Arizona..." Thanks for the memory! PatG
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PatgMc: I've also been to Winslow. Kind of a neat place. They have a great archaeological site there which is why we went. Unfortunately, when you start humming that song you cannot stop. Humming is good.
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Great news PatG. Have been lifting you up in prayer. I am on the 3 wks on and two weeks off for the last 6 months. Will have a pet scan coming up and will find out results Jun 25th. As of May 1st it was 2 yrs on I/L plus Xgeva shots. Just found out my grant funding for Ibrance has run out and no breast cancer funding right now. Specialty Pharmacy applying at Pfizer for funding....will see what happens. Love reading all your comments...you girls are the "bomb". Prayers to all....attitude is important.0
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candy, I have found that the level of care varies radically in large and small towns. You can have a good doctor in a small area and a bad doctor in a big city. (And vice versa.) I've had both. Doing the driving and dealing with the inconvenience and stress is a quality of life issue for me. I stay only in my town for that reason even though there is a much larger city 45 minutes away.
Jaylea, look at my photo. Do you want that person writing you a letter in anger? I think not. Never mind meeting me in a dark alley.
Pat, in defense of the tech who doesn't like using ports (I can be nice), not everyone knows what kind of port they have. And he works in more rural areas (speaking of rural areas) and there are no nurses with port-use experience or training. As it is, my good tech has to call the infusion center to get a nurse to come over (very close by) and de-access my port. My onc nurse gives me a vial of heparin to take with me. I try to make using my port as little trouble as possible for them.
Pat, I had one of those moments, too, when I found out that a therapist at my new PCP's office (yes, they have their own therapist, very cool) is named Dr. Winslow.
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Candy, I'm from a middle-sized city, so I have no valid opinion to offer. I believe that I'm getting excellent care, but it is at a local cancer facility (the VA Cancer Institute, and blessedly, I'm with one of the head knockers there....thanks to my surgeon, who is his good friend!). Oops...I used an exclamation point, and I'm in a deficit position for those today already.
I tend to be with Jaylea on your question: 100 miles isn't so far for peace of mind, if that would give it to you. Perhaps you could receive your treatment locally but have your primary onc be in the larger facility? A downside, of course, if the risk of making the local folks irritated with you, and I'm a pleaser....I want them all wonderfully happy with me and thinking, "Oh, we must keep this one healthy, as we like her SO much"....totally in my head, of course. They probably don't know me from the street sweeper!
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PatgMc- I am so excited for you and your test results. It's a wonderful image to picture you dancing in the waiting room. I'd do the same if I was able to get results that quickly. My MO makes me wait days until he releases the information and can tell me in person. But, if I'm fortunate enough to get good scan results anytime soon, I might just find someone nearby to dance with anyway.
Neogirl- I've lost probably 40-50% of my hair. It's crazy how much keeps falling out. I have just enough to twist it and clip it up, effectively covering my head with what's left. There are still lots of bald patches, but I use the Toppix hair fibers to fill those areas in. I've accepted that my hair looks strange and bad, but it's better than wearing a wig, or wrap for now. I hate wearing wigs, and would shave it off altogether, except that it's still very patchy and cutting it might make it look even weirder. I'm also afraid that once I shave it, I'll never have hair again and that's more than I'm willing to deal with at the moment.
I've had a lot of emotional outbursts lately. I have lots of hormonal side effects (moodiness, weight fluctuation, sleep disruption, hot flashes, etc.) But, lately, I seem to have lost all my patience with everyone. Clearly stress is an issue in my life, but that's not really anything new. I'm hoping that it's related to my lupron shots, and that my body will readjust soon. Do you all get your hormone levels tested also? I've never had that done, and I'm wondering if I need to.
Hope you're all well.
Missy
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About cancer care in a small town: My oncologist, whom you've all heard me rave about ad nauseam, started a cancer center in a small town to which he drove 100 miles 2 days a week. Even as he hired more doctors for his Memphis practice, he kept going to Blytheville, Arkansas because he had come to love his patients there. When he finally closed the Memphis practice and joined a hospital cancer center, he chose to go to the small town 3 days a week. All this to say, sometimes you get top doctors in small towns because they choose to practice in a more relaxed and personal way and get to know their patients better. (My doctor was once a researcher at the NCI and St. Jude.) They may or may not even live there.
Doctors are required to attend medical conferences and keep learning in order to keep their licenses so I don't think anyone is likely to get an ignorant oncologist. I've had three on this journey. One had a huge practice and has become a nationally known researcher and I believe he chose the best treatment for me in 1994. After all, I'm still here! The second one years later was a lovely man and he didn't freak out when I disagreed with him on a treatment plan but he left and joined a huge practice. I'm with the third now and I pray he doesn't retire while I'm still breathing. (Yikes! He may have to practice 'til he's 100!) I love his vast knowledge and his grasp of the latest research (he was once a researcher at the NCI and St. Jude) but, more than that I love that he deeply cares about me and my family. He's concerned about my quality of life and willing to talk with me about how I want my death to be. I hope all of you get to have one like him.
Love from PatG
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georgiabird, I don't get my results immediately. Sometimes they show up on my electronic chart the next day but this time I had to wait for my onc appointment. Fortunately, I had booked it for two days after the scan. When you get your results I'm going to be ready to dance, girl! You just get a picture of you and bald me twirling around your kitchen! Everyone else here can join us!
One more comment about getting results: Whenever I read about my good results on the electronic chart, I didn't tell my sweet oncologist. I knew he had to give bad results to people so often that he needed the chance to tell good ones now and then.
About the baldness: I had 6 rounds of Taxol/Carboplatin in 2012. Dr. Smith really blasted me with it because he said we were going for a cure for my MBC. I really appreciated that because, like most of you I always heard there was no cure. (I knew better because of my friends but still...) Even though I ended up with bone mets in 2016, I'm not sorry I had that time with no evidence of disease and felt I was cured. It's also why I don't doubt I can do it again...and I'm pretty close. My hair came back only in patches and it's just white baby-soft fuzz. My sweet husband shaves the fuzz for me every month. I considered having a human hair wig custom made but changed my mind. I found an easier-to-care-for acrylic one at PaulaYoung.com and loved it so I bought 5 of them! I'm ready to live a very long time to get my money's worth out of these suckers! The nice thing is I don't have to worry about future treatments taking my hair. That distress is forever over. What always makes me laugh is that in my past life, I spent a fortune and way too much time getting my roots colored. My 5 wigs are all blonde with dark roots!! Go figure! (Oh, here I go with the "extra-mation" points.)
Love from PatG
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PatG, you have brought indescribale joy to New York! I am SOOOOO happy to hear your news. :-)
NeoGirl, during the few seven months my only side effect was fatigue, and it was mostly just a nuisance as long as I got an hour extra sleep a night, and took an occasional nap when I needed it. Then my AI was switched from anastrozole to letrole, and a few months later my hair did start thinning a bit, and one eye burn and watered. The hair thinning stopped after about four months and it's barely noticeable. The eye problem comes and goes but it's really not bad. Considerng how I felt before the meds this is heaven!
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just received he results of today’s CT and Monday’s bone scan. All good, no activity in bone, one remaining lesion in the liver, now 1.9 cms, started at 5.2 cms three years ago. Continue on letrazole and Ibrance 75 mg
Jo
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Awesome, Hobbes!!!!
Three years in and going strong!!!
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Hobbes, WOOHOO! Great results!!!
Pat, WOOHOO for your results, too!!!
Of course, I am doing the happy dance for both of you, but unlike Pat, I have no stranger here to dance with. It's probably just as well. I possess a love for dancing, but not a talent for it. Of course, no talent is needed for the happy dance, just an abundance of joy!!!
Have I exceeded my daily limit for exclamation marks? Well worth it, I would say.
Hugs and prayers from, Lynne
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Hello Ladies! Lots to read after only a few days away!
PatgMC - Thank you for all the encouraging posts! And CONGRATULATIONS! Also, I too am one of those that is always constipated, no diarrhea. Miralax has worked the best for me.
Neogirl - I have had hair thinning. 3 cycles of Ibrance and my hair is thinner. Now trying anti-hair loss shampoo and hoping it helps!
Wandering, Jaycee, and others. I'm 53 years old and have been married 17 years. I have a 16 year old daughter. My husband has also been a ROCK to me, always full of support. My daughter is also awesome and helps me out.s Thankful for all!
Wandering - its great that your cancer marker already went down! I've been on Ibrance for 3 cycles and my marker is holding steady, but hasn't dropped. I have more blood work on Monday; hoping for some positive change!
Hugs to all!
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Ladies--
Not sure how many of you use Facebook, but I have found a Facebook group called Ibrance and Faslodex Friends and Support if anyone is interested.
https://www.facebook.com/groups/1120285321353435/
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Hobbes, Woohoo! This is your liver doing the BeeGees' Stayin' Alive! Congratulations on rocking the 75mg Ibrance!
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MountainLady, I'm on that Facebook group. I like it but I find this one so much more satisfying, don't you?
Thanks for the Miralax tip. I find that Raisin Bran does a good job for me if I can just remember to eat it.
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PatgMc - This group is much more in-depth. Lots of great information! I am still getting used the bulletin board format though. Get lost tracking all the great conversations. LOL
I've tried various foods and the Miralax works best for me. My doc says that it can be taken often and won't cause dependency, so it's safe.
Raisin bran sounds good! Haven't had that in years!
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MountainLady, where else can anyone besides little boys hang out with friends and talk about pooping?! PatG
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PatG - LOL! Now that is funny! And true!
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i am a member of the facebook group too. I find this one mote supportive and more scientific. Better info here. This group seems a bit older and better educsted
Hobbes/ Jo
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hi, I’m stage 4 de nova with bone met. I’ve been on ibrance for 8months and the activity from pet scan is low now that my onc suggest to go for mastectomy as the breast lump is still there. I’m 43 and have been happy on ibrance with little side effects. I was hoping to continue on ibrance. The thought of surgery scares me. Any thoughts or experience anyone who might be in my same shoes? Will I be asking for trouble to leave the tumour inside me? I am happy that i can still do everything as normal now, will these happy days end if I don’t do surgery.
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