Ibrance (Palbociclib)
Comments
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Grannax, praying for great PET results for you today, and a good cuppa after! Mine is Wednesday so I am right behind you.
Leapfrog, sorry you are still struggling with your marriage, but glad your DS is still helpful. You are welcome to complain here any time. We all deserve whatever help we can get. And celebrate the tumor marker progress and all small joys!!!
Joyner, I am enjoying hearing about your trip so please continue. And be safe!
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Jen: it is amazing how MOs can play down SEs! Mine actually told me last time that UTIs are not a known SE of Ibrance. This is so untrue, it is written in the PIL and there are so many persons with the same problem in this forum. I got the feeling that he simply does not want to be bothered with boring SEs, he rather wants the impressive treatment options and stuff like that. The other (female) MOs are more sensitive to the UTI topic, but unfortunately, this male MO has the least seniority and therefore usually has to take care of the regular monthly consultation time. Therefore, I cannot get away from him. I have now decided to go to a urologist to have everything checked. Hopefully she is more helpful, because I get UTI problems already if I do not drink anything for 3 hours or get cold feet or cold abdomen ... which nobody can avoid all the time.
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leapfrog I’m glad you’re outside of the oppressive torture zone. Sometime soon you’re going to not care about your husbands empty promises. I’m happy your son is your available rock. Happy you can express yourself here.
LXB I think all of our doctors try to tell us what ibrance does or doesn’t do. We share SE in real time here and we all agree that fatigue is major. I hope you feel better. Soon and find a nice zone for healing and QOL.
Grannax I pray your scan goes well today and you have great results.
Thank you I write for sharing 2 years on Ibrance 75 it’s going to give me the encouragement I need to ask for it tomorrow at my onc appt. I reduced to 100 but still by week 3 I’m exhausted and have to push myself for any physical activity.
Joyner thanks for the many updates. I love it.
Tanya
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I believe that I may have a uti. If so will I have to stop taking the ibrance? I probably won't make it into my mo today and the doctors in urgent care seldom k
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I had my PET and a big cup of coffee. But, my intuition is flaring. The techs faces and what they did and didn't say, Their expressions. I won't get results until Friday. I'm hoping my intuition is wrong this time.
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Holmes,
My MO usually just prescribes an antibiotic and it takes care of it in a couple of days. I have not had to stop Ibrance during the process. I was told to be mindful if you get a fever and go to ER if it goes over 100.1.
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Grannax- don't let any of that ruin your day- I thought my last one took longer- so worried- and it was stable. I wish you didn't have to wait until Friday.
Leapfrog- I am thrilled that your TMs went down again and your scan is stable. That is a celebration!
Anyone on Ibrance taken the new Shingrix shot yet? I am having one today and a bit nervous.
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thank you for the information intothelight. I didn't know about the fever either.
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Holmes: make sure to distinguish between a bacterial UTI and inflammation. For the first one, you need an antibiotic. I tend to have inflammation caused by the Ibrance - at least this is what I believe is the problem. It feels the same like an UTI, but if I drink lots of warm, alkaline liquid (e.g. herbal tea), it will vanish without an antibiotic. In general, I need to drink 3-3.5 litres of liquid every day to prevent these UTI symptoms. Still, I have very dark and smelly urine (sorry for being so explicit). As I wrote earlier today, my MO does not believe me. I will have it checked by an urologist next week.
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Nkb-I wanted to get a shingles vaccination last year. My oncologist said fine but my primary care doc said no. I called Pfizer and they said they couldn't tell me whether it would be safe. I would definitely like to get the Shringex-which of your doctors gave you the go ahead? Let us know how it goes. Thanks!
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Nkb and Chicagoan - I had the Shingrix vaccine 3 weeks ago. I took it after being off Ibrance for 10 days instead of the usual 7, and apart from the arm muscle being sore for a few days, it was fine. My MO said to check with the Specialty Pharmacist which I did, as well as my own local Pharmacist, and they felt it would not do any harm with the Ibrance, apart from not being as effective. It probably comes down to personal choice as there is not yet a definitive answer to interactions - I go for scans in October...
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NKB my husband had the Shingrix shot a few weeks ago He had a really hard time. He was sick for two days and had a fever. Be careful
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Grannax ive been through it too. I find the techs can have a really hard time to interpreting. And they don’t deal well with confusion. In the end so far my results have all been fine. Keep the faith!
Thinking of you!!!!!
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well- I got the shingrix shot today. The injection nurse said lots of people had a sore arm, mild fever and headache. I am going to put off my start date for the next cycle of Ibrance a few days and take some Tylenol.
My MO said it was ok and the onco-pharmacist said ok. My primary seemed to have no opinion and ordered it for me.
Shingles would be very bad I think- so my motivation is to avoid shingles. It is a two shot series. I will check back in with how it went in a few days. Thanks for your feedback!
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Granex-one day at a time, it is so hard to interpret results based on the techs response. Stay positive, we are all behind you
JoynerL - I am living vicariously through your travels. you are on my old stomping (sailing) ground. The North Chaneel and the Chesapeake bay. Enjoy.. enjoy.. enjoy!
LXB - we all have some level of fatigue. I have been on I/L for over 3 years and have worked my way down to 75mg. Fatigue is less. I am assuming you are not on letrozole, which complicates things for us women. Letrozole, is not an easy drug in itself. If your firm has a ggod disability policy, go for it. Spend your time taking care of yourself, enjoying family and friends, and maybe do some advocacy work for metastatic breast cancer... or whatever resonates with you. As i am sure you realize, priorites differ afte a metastatic diagnosis. Best of of luck. And welcome to the group
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I have a couple questions...don't know how to express the first one. Has anyone experienced bowel problems. When I go to the bathroom my bowels are like hard rocks. Sorry to express it this way. It isn't normal for sure, so, am wondering if the I/L is what is causing it. Secondly, I am receiving Ibrance thru Pfiser pharmacy instead of my local specialty pharmacy now. The new prescription is kicking my butt. Have always been tired, but by the end of the 21 days I can't do anything. Have been on the new pharmacy 2 cycles. I take the 75mg and have never experienced what I am experiencing now. May 1st 2016 is when I started I/L. Will speak to my Onc in Oct. Have had no progression so far. This new pharmacy prescription seems so much stronger than before. Could that be possible. Thank all of you for your sharing and great knowledge.0
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Thanks for your encouragement, my instincts have calmed down this morning. I think I've figured out why the techs were so serious. The main tech was irritated with the other tech who didn't notice that my capris had a tiny tab of metal on the pockets. Ooops They showed up on the scan. Also, the nurse was irritated with the main tech because he didn't notice that I had a fall in June, I hurt my ribs and that might have shown up on the scan. So, I have decided to go back to my hope that I might be NEAD this time. One extreme to the other! Ha
JoynerL I'm sure you don't have access to the September Southern Living Magazine, but they devoted five pages to exploring the Eastern Shore. We've decided to have day trips to the places they highlighted. There's even a sailboat we may charter, it was built in 1895. So, except for one day in DC, we're staying on the Eastern side of Maryland. The sailboat is docked on Tilghman Island also we will go to St Michael and Easton.
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My MO approved the new Shingrix vaccination for me. I had the the Zostavax vaccine August 2017. CDC recommends the Shingrix if you had the Zostavax previously. Medicare does not cover Shingrix at this time. I will get it soon as I do have small outbreaks of Shingles type rash on back when my body is stressed from Ibrance/letrozole. I will time it with a higher ANC during Ibrance cycle. Please correct me, but I think the Shingrix is not a live virus.
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airlinegal, I have some constipation from Ibrance. It built up over time, very slowly. We started at about the same time. I started I/L in April 2016. The increase in strength seems odd and deserving of investigation. Check the bottle carefully. Do you have any old bottles from the stuff you got before? They really should be the same. Check with both pharmacies and Pfizer if you have the time and inclination.
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NettaGER, I've always wondering why you don't blame at least some of your UTI-like issues on Letrozole. Estrogen is so good for that area and ours is suppressed. I blame Letrozole all the time. Do I need to blame Ibrance, too? I'm not letting Letrozole off the hook but Ibrance may also be involved, you're saying.
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Airlinegal: As far as I know, the different strengths of Ibrance have different colors. Do your capsules look any different? Maybe the others, who have been on different strengths so far, can give you input on which strength has which color and possibly which size. Pharma companies put much efford in avoiding mix-ups, I cannot believe that something went wrong there, but maybe in the pharmacy? On the other hand, they also have procedures to prevent mix-ups there as well. Could it be that you had some kind of infection that, in combination with the Ibrance, multiplied your SEs? Did you eat any grapefruit oder pomegranate? These fruit can cause stronger SEs.
Jaycee: I have the impression that I have significantly less UTI issues during my off week. This is why I blame the Ibrance. But surely I can be mistaken and Letrozole is at least contributing. I believe that Zometa is also a candidate to be considered... plus the contrast agents from staging. We get so many chemicals, and most of them are eliminated via the bladder, it is no wonder we are having probkems.
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Airlinegal, constipation issues for sure. When I was on original tx 12 years ago, that was one of my worse SE's for sure. So this time I was determined to stay on top of it. In my toolkit are daily doses of Metamucil and, at the ready, Miralax and stool softeners.
Grannax, glad you're off the ledge. Praying for positive results for you.
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sandibeach- the shingrix is not a live virus vaccine. My MO has nixed all live virus vaccines- luckily I don't need any.
So far I have injection site pain ( not as much as with the pneumonia vaccine however) and nausea. No fever, arm redness etc. Maybe a headache- although coffee tasted bad today so no coffee could have caused the headache- Tylenol fixed it.
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Thanks for the update Nkb-se's don't sound too terrible. I am going to try and get one this fall.
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Airlinegal, the strength is written on the capsule - yours should say Pfizer on one end, and PBC 75 on the other. And they should be a light orange color. (100mg is two-toned light and dark orange, while 125mg is dark orange). Even if it looks exactly the same, it's worth a call to Pfizer to report your different reaction to it.
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hi! Completely off topic here but does anyone know anything about VAIN? My best friend just diagnosed with VAIN 2. (This is an HPV-related neoplasia of the vagina).
Just starting to poke around for info, thank you
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Thanks for your thoughts, time-for-a-cure. In fact I am on Letrozole. I suspect that contributes to the fatigues and other side effects, like body aches and sweats. I think I will give the long term disability option a shot. Wishing you the best
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Grannax, well done on choosing to settle down and away the proper results. All of that business you noted makes such good sense.
YES! I am a subscriber to Southern Living, and when I get home, my issue will be there waiting for me. I'll take a look!
For anyone with time on your hands and the remotest interest, here's a link to photos and my journal of the trip. Within the link, there are photos and a separate link to the journal (which includes the unfortunate boxer shorts event). I add to it either each day or as soon as I have a decent connection (sometimes every other day or so). The material will expand and photos added during the trip. We're on the Trent-Severn Waterway in Bobcaygeon right now, preparing to head out again.
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Oops...journal wasn't included. Here's the journal:
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Love the journal, Joyner. I am soooooo jealous.
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