Ibrance (Palbociclib)
Comments
-
Lynne....Yes. Emily is my oldest granddaughter (28)...one of seven siblings. All siblings are in the wedding...four sisters and 2 brothers...a total of 9 bridesmaids. Her dress is gorgeous, and YES...I am a crier!! The wedding will take place in a very old Catholic Church in Cincinnati (St.Xavier) and the reception will follow at Ault Park. So...I'm praying hard that all goes well and weather co-operates.
Crystal...I wish you and all of us a very smooth journey. I don't recall having a too horrible time when I was on IV chemo...but, that was 7 years ago.
Oh...I'm so hoping each round doesn't get worse. I asked my onco that question and he seemed very positive that it wouldn't. But, we are all different.
0 -
I'll be back later to see what you Ibrance Dancers are up to. I had a nauseous couple of days so I decided to take a one day Ibrance break so I could feel really well while painting with my granddaughter. Sometimes you gotta' do what you gotta' do! See you tomorrow!
0 -
Hi Crystal. Welcome to our little group. We are sorry you have to be here but glad to have you join us. You truly are not alone! Hope your body receives the meds well.
0 -
Welcome, Crystal...and feel better, Pat! We need your wonderful voice!
0 -
Hope, From my experience, I would say that SEs vary from one cycle to the next with seemingly little identifiable pattern. With that said, I have had very few SEs for the last several cycles. My first cycle was the worst. I took naps in the afternnoon because I was so tired. I had nausea every morning, but a light meal helped to relieve that. My hands were itchy. My scalp tingled. I developed a few mouth sores. My neutrophil count went down to 0.4, so my dose was dropped from 125 mg to 100, and I have been at that dose ever since although I have had to take extended breaks after a few cycles. I still get that tingly scalp every once in a while, but I feel really good lately. I am on faslodex rather than leterozole because Arimidex failed me as a first line of treatment. That is a a lo game-winded way of saying that SEs did not worsen with each cycle.
Pat, I hope you feel better soon. Do you have any medication to help with the nausea?
Crystal, Welcome to our group. I am sorry you have reason to join. There are many supportive people here for you.
Lynne
0 -
Thank you Lynne...I have a bit of nausea on occasion, and the itchy/tingly scalp for a few days. I took Arimidex for five years after my first diagnosis of breast cancer - after IV chemo and radiation.. Just happy to hear I might get lucky with few side effects as time goes on.
Hope
0 -
Welcome everyone. The best way to manage side effects on any drug is regular, consistent exercise. Doesn't have to be much. It still may be the last thing you want to do ... but you have to do it. Join me on the Stage V Fitness thread. In this "staging" model Stage V probably means you are dead. But Stage V, to me, means you are past all these diagnostics and buckets ... living your life and getting exercise.
>Z<
0 -
Hi All,
Just wanted to quickly pop in to say that you are stuck with me for a bit longer. Despite the progression in my bones (unclear when that happened), my MO and I have decided to soldier on with the Anastrozole/Ibrance combo. I'm quite pleased with the decision as I don't feel we have clear evidence that it is not working at this point. There has been progression in the bones but my lung has dried up (PleurX catheter gone) and a lesion on my chest has definitely receded somewhat. Scans again in three months so perhaps we will know better.
Unfortunately, I have not been without a few challenges. It turns out that I have some type of infection, either in my lung or the pleural space. Had quite a reaction (fevers, chills, passing out, nausea, headache) after the surgeon pushed saline through the line to see if it was plugged. I'm now on antibiotics and feeling much better, although nausea is back, this time from the antibiotics. Started probiotics today.
I agree about the exercise Z but must admit it has been challenging for me lately. Working full time I don't have the luxury of joining a gym or getting out for runs but I do walk my dog (5 year old collie) at least twice a day. Lately... it's been a bit of an ordeal with everything going on..
Welcome to all the new folks. You will find this a great place filled with lots of support and information.
Pat(2)
0 -
Lynn, thanks for your kind words, I guess sometimes we just need to vent and it's good to know we have such a safe and comforting place here to be able to do that. I agree we all want to hear the good and the bad if it helps anyone feel better to rant.
Nona, I think you will feel good for that wedding, nothing like having a really wonderful event like that to take your mind off the cancer for a little while. I know exactly the church and Ault park you mentioned. I'm from Cincinnati and lived there the first 38 years of my life. A cradle catholic who went to Mother of Mercy HS and then UC where I met my DH. We will be married 57 yrs in October and are still waiting for our first grandchild to get married. No one seems in a hurry these days. I'd sure like to have a great-grand around, I miss the babies.
PatG, feel better soon and if you need another day off Ibrance, take it. From my last conversation with my MO, he thinks it doesn't hurt at all to take a day or two off. He did say, just take the extra pills at the end of the cycle or not if you really can't face them. I've done that and like someone said, save them for a possible time when delivery is delayed.
Pat 2, happy to hear you're sticking around, I believe this treatment will work for you as it has for me and so many others. I also have mets to my lung and some node involvement and things are stable now.
For all you newbies feeling side effects, in my experience, they mostly level off to a great degree, especially if you try to exercise as Z says, stay hydrated and try to eat healthy.
Faith.
0 -
Pat - the dog walking is all you need. that mutt is saving your life.. keep 'em around. It's important not to get stressed about anything ....
>Z<
0 -
Faith....What a small world! I went to McNicholas High School Married my high school sweetheart, but we were divorced after many years. He has since passed away. Neither of us remarried. That is wonderful that you have your spouse still with you after all these years. I agree...kids are not in a hurry to get married these days. Time have changed and sometimes I find it difficult to relate....and, I miss those babies. I'm not sure if Emily is in any hurry to start a family. But, I'll keep my fingers crossed!
Well...my first day without the Ibrance. Hope I have a good week. I am scheduled to see the onco on Thursday and also have my Zometa infusion. I'm hoping I can skip the infusion for a couple of days. That's two days before the wedding and I had lots of pain for two days after my first infusion.
Hope
0 -
Faith and hope... It truly is a small world! I went to Mt Notre Dame high school and our son was going to go to St Xavier High school, but we moved away from the area. I hope you have a wonderful time at your granddaughter wedding. They are lovely venues!
Hugs and prayers
Claudia
0 -
Claudia....Too funny! Yes...it is quite a small world. I worked with a girl who graduated from Mt.Notre Dame....we still get together even though I retired quite a few years ago.
Hope
0 -
I am on 8th cycle of Ibrance 100/ Letrozole. SEs manageable and scans, TMs and labs are stable. My latest Dexa scan showed worsening osteoporosis, even with the 70 mg Fosamax, impact exercise, Ca and Vit D3. Waiting to hear from MO what is next. Prolia? No mets to bone (yet), but mets to liver. Anyone have this same issue?
0 -
For me, the fatigue has eased or I've gotten use to it, as I start my 6th cycle next week. I have more or less been doing 3 weeks on alternating with 2 weeks on due to low white blood counts. I have to get a cbc every week and my MO won't let me start a new cycle until my wbc is at least 1.7, he just has me take another week off. And Z, I do exercise (walking the dog) regularly.
0 -
Sandi...I am getting infusions of Zometa once a month to strengthen bones. No mention of liver mets - yet. Just rib/spine area.
0 -
Patg....ordered the book Radical Remission....very informative...thx for the suggestion0
-
Hi ladies. Well I was wrong. Oral surgeon says no infection so I get to stay on my ibrance. Yay. However there is more areas of exposed bone in jaw. Just a few. I now cant brush that area or eat hard food. Still not sure what that bad taste is. Does ibrance ir faslodex cause bad taste. Hope everyone is feeling great Hugs to all
0 -
Nonahope: Thankyou! Will let you know what bone building Rx my MO decides. Don't have mets to bones (as of last scan), but osteoporosis has worsened ....thanks to Letrozole.
Also, I/L does not cause bad taste for me.
0 -
Melmcbee-
No taste issues for me so far. On 6th round.
0 -
Thank you everyon
0 -
Mel...I have a bad taste, but blame it on the salt water rinses. I'm constantly sucking on peppermint candy.
Hope
0 -
Melanie, I have only had a bad test in my mouth twice while on faslodex and Ibrance. The second time was for two days following my last Faslodex injections. This will sound weird, but some of us have noticed a distinct odor to urine for a couple days after the shots, and the taste reminded me of that odor but also a bit metallic. It did not last more than a couple of days for me. I do notice that some things taste a bit off to me at times.
Lynne
0 -
Mel~ I have lack of taste. No taste. None. Nothing. Nada. Hard boiled tongue here. Texture becomes a problem also for me. I am starting round 9! On my week off I can taste again. Last month I lost 6 unintentional pounds. I constantly swish my mouth with biotine. If I remember correctly on the paper work with this study. It said that this drug causes severe dry
Mouth in some ladies, use it five or more
Times a day and that seemed to help a lot of patients in the trials. Hope that helps and you resolve this issue. I can see if I didn't have a lot of moisture in my mouth that might happen. Plus it's not just one medicine most of us are dealing with. It helps with dental issues too to always keep Your mouth moist as possible! Hugs ~M~0 -
Does anyone take iron? I have been anemic for well over a year and they have never suggested taking anything for it. Past two nights I have gotten the worst Charlie horses in my legs. The pain is horrible.
0 -
Diana...I used to get horrible Charlie horses...I was told to drink more water. Plus, eat a banana every day. I haven't had any in awhile...but, they would have me in tears. I, too, have always been a bit on the anemic side.
0 -
Dianarose - I have been anemic for over a year also but can't take iron supplements because of constipation issues. However, Charlie horses are usually a lack of proper hydration, or low potassium, and/ or low magnesium. The summer months can be especially difficult. If you can stand to drink Gatorade(i can't) drink that. Or try eating a banana a day, I find that really helps. Also, magnesium supplements. I take 4 a day. For iron, saute some spinach in olive oil and garlic, kale is a great source. Really any dark leafy greens. Also, if you don't find it too gross, eat liver. I am one of a few people who like it. These foods really do help!
Good luck! Hugs and prayers everyone
Claudia
0 -
Dianarose - I have been anemic for over a year also but can't take iron supplements because of constipation issues. However, Charlie horses are usually a lack of proper hydration, or low potassium, and/ or low magnesium. The summer months can be especially difficult. If you can stand to drink Gatorade(i can't) drink that. Or try eating a banana a day, I find that really helps. Also, magnesium supplements. I take 4 a day. For iron, saute some spinach in olive oil and garlic, kale is a great source. Really any dark leafy greens. Also, if you don't find it too gross, eat liver. I am one of a few people who like it. These foods really do help!
Good luck! Hugs and prayers everyone
Claudia
0 -
Good morning! I echo all with the drink lots of water and take Magnesium. I missed a couple of days on my trip and paid for it dearly with leg and foot cramps. I will not do that again! I have a scan scheduled on Tuesday. Hope it also helps dx what is going on with my arm. The swelling is down but has increased to my hand...no one else have this issue?
Chris
0 -
The bad taste in my mouth is from the antibiotics I just took for the UTI. No bad taste other times. Metallic smelling urine comes at the end of the Ibrance cycle.
Chris, my lymphedema started in my arm and went to my hand. If a doctor has seen it, I would think they would recognize lymphedema. Probably not that but just a thought.
0
