Ibrance (Palbociclib)
Comments
-
Karen, I am celebrating your great news! Hooray!
0 -
Congrats Karen!
0 -
Yeah, fantastic, Karen. We love NED.
0 -
Hi, I see where some of you are speaking about scans. I’m interested in knowing which scan is best. My insurance won’t cover having a Pet that often and I have a pacemaker so an MRI is out.
Therefore, does this mean that the CT ‘s I’m getting are less effective for monitoring?Know this is a hard question to answer but I’d appreciate some input so that I can ask my Onc to press my insurance for a PET if that’s what I need. Thanks in advance ....
0 -
Karen, that's a great early Christmas gift! Here's to many more years of NED!
0 -
Great news Karen!
Ginny, I've always been under the impression that a PET scan is best, but others think an MRI is. I can't get CT contrast so it worries me a little if just the oral contrast is enough when getting a CT scan.
0 -
Lissalou - In response to your question about scans, I have bone mets and get CT and bone scans.
GinnyO2 - my ONCO feels gets better results with the CT which reads neck to pelvis and a full bone scan
For those asking about scalp pain, I take iBrance 125mg, Fermara, and I'm on cycle 76. My scalp has burned the majority of the time. I discovered my hair would thin in the areas where it was burning. It started at my hairline around my face and has moved around my scalp. It's now at the top of my head. Putting an ice pack on my head has helped....and gives me something to laugh about.
As many have said, each month presents a new 'adventure/side effect'. Some last a month, others last months on end and stop as quickly as they began.
0 -
Karen,
Super news. I am sure you ARE relieved. This scanxiety stuff is for the birds! Carry on...
0 -
Great news, Karen!
0 -
Congrats Karen!
Welcome April!
10 days until end of Cycle 2 for me and then get week off. Symptoms are still kinda the same with some new twists...Gas so profound that it should to be immortalized as the loudest sounds to come from a human being, Mild heartburn. Sore scalp is gone now but my hair has thinned quite a bit in the front. Not happy about the weight gain from the surgical menopause plus the AI...eek...Edited to add no mouth sores this round. I am proactively swishing at least once a day with Colgate Peroxyl mouthwash, seems to be keeping them at bay. That stuff worked to heal the ones I had gotten the first round before I discovered the stuff via a friend of mine on here.
Definitely going to be making my order for refill in the next couple days so no holiday mishaps happen. My first bottle of Ibrance came in this huge box with a bunch of stuff I'd never use, my refill came in a bag with no padding, just the bottle. It would be nice if they had included a calendar and a pen...THAT would have been helpful!
0 -
Karen, congrats, this is wonderful to hear! What a Christmas this will be for you and Your’s !
Thank you Jackie5IE and Lucky4Life for your quick responses! Lucky, 76 cycles...that’s encouraging ! Could you share where you have Mets ?
Thankful to hear that CT is effective too and I feel better now Next CT is Friday 12/6 and Onc will give me the results on 12/10 with hopes of giving me off for the holidays .
I’ll will also ask Onc if we can press the insurance company for another PET sometime during the new year. Thanks again to everyone on this site , what a God send !
0 -
Karen - That's great news! Thanks for letting us know! Here's hoping for many more NED scans
0 -
Best news ever, Karen! So happy for you!
Love to all, Lauren
0 -
woooohoooo Karen!!!! High fives and dancing around the room!! 💃🏿 such fabulous news!
0 -
Congratulations, Karen! You go, girl!
In case any of you missed the overwhelming subtlety of Lucky4Life's post, I'm going to pause here and give you a chance to re-read it.
(.......................Pause.......................)
76 CYCLES of IBRANCE! Congratulations, Lucky, and may your scalp be burning for many more years!!
Love from PatGMcImpressed
0 -
Thanks all for your good wishes! Returning them all to you too!
Re scans I've only ever had CTs for this... My team says no need for PET as the CT should pick up anything which needs to be treated. I think that's code for PETs being expensive!
My new Oncologist ( who is the boss woman and knows her stuff) also said I didn't need to have scans if they made me too anxious and we could just go with bloods and observation of symptoms...... ehhh I'll be having the scans! I'm getting better at 'parking' the anxiety and only have a scan every 6 months. That's manageable.
Some may remember I posted that it was mentioned by my nurse about moving Ibrance to 2 weeks on 2 off ( I think to keep me on a 4 week rotation in line with everyone else - apparently I'm their only patient not) and wasn't comfy with that. I'm already on 75mg with a 3 week on 2 off stretched schedule to get my bloods back to an acceptable level. Thankfully my new Onc agreed with me.....let's not mess with something that's working. That's a relief as I thought I might have a battle on my hands!
0 -
Great news Karen0
-
Wonderful news Karen!
0 -
Good afternoon all
Best news ever Karen. Love it!
Tany
0 -
Thank you all for the warm welcome! Karen, congrats on your still NED status, excellent news! So far so good, have to tell you all that I can literally breathe so much better which makes me think the fulvestrant is shrinking the mediastinal lymph nodes that are pressing on my windpipe so that i couldn't take a deep breath, for a couple of months (while my gp told me it was viral and my lungs were clear so dx me with reactive airway disorder/asthma - I am still so mad about the lack of medical care). WIll take day 4 of Ibrance at dinnertime.
0 -
Congratulations on the amazing news Karen! We all need a boost of hope once in a while!
0 -
I'm so thankful for all the treatment success with ibrance here and continue to pray for all of us that continue to dance. I’ve gratefully been stable on I/F for 18 months with bone and organ involvement🙏. My insurance company will no longer provide coverage for branded femera as of January 1st. I'm nervous to change to generic. I'm not sure if the Ibrance trials were done with branded femera or generic? Has anyone had to change and it didn't effect the treatment outcome? Or, should I try pay for branded femera?
0 -
Aprilgirl - I am one day behind you, so just took day 3. I hope I can get to be as cool as Karen or Simone or Philly sometime next year and NED
For the experienced ladies - regarding caffeine and alcohol - Id like to have one cup of coffee a day - is that really a problem or do I need to start switching to decaf?
You read all the information they give you and its a massive scare piece about avoiding anything additional that could tax the liver. Alcohol I don't drink as much, but a glass of champagne over the holidays would be nice.0 -
Congratulations on your results Karen and you have found a good oncologist, great news \o/.
SondraF sorry to meet you on this site, but it has been a great place for me over the last 18 months; reading everyone's experiences and finding support and getting advice.
I have been drinking decaff coffee for longer than I have had cancer, but when I go out I have a 'proper' cappuccino; after a medical appointment with a doughnut!! It's about quality of life, living the best you can and if that means an occasional alcoholic drink when you fancy or at social events, I say go for it. However, if that attitude would give you cause to worry, give them both up. We are all different, do what's' best for you.
0 -
SondraF sorry you're here with us. My wife is currently on Ibrance cycle #6. Upon her stage IV diagnosis she chose to give up alcohol (not really much of a give up, but still........), however, she loves her coffee in the morning. Coffee was fundamentally a quality of life issue in her mind so she still drinks two cups of the real stuff each morning. Her latest scan showed improvement in all nodules. As denny10 said, everyone is different, and no one knows your body better than you do. Best of luck on your dance.
0 -
Sondra, I’ve been drinking one cup of coffee in the morning for 30 years. It prevents many headaches for me. Never did I ever consider giving it up after the mbc diagnosis which was almost 9 years ago.
I never drank much alcohol but allow myself the occasional celebratory drink, like a nephew’s graduation from medical school in May and Thursday’s Thanksgiving family gathering. It’s minimal but I don't feel deprived, nor do I believe in deprivation. It too often feels like we are punishing ourselves for “getting cancer” as tho it was our fault and somehow we have to pay for that transgression.
0 -
Anewbreath, it is my understanding that brand and generic drugs contain the exact same active ingredients. If differences exist, they are in the inactive ingredients. So efficacy should not be an issue. Side effects could be. I have taken generic letrozole for my whole 43 cycles on Ibrance. The brand I get is Accord. I think it is a good brand. There was a discussion in this thread about side effects possibly caused by different brands. I'll try to find it and post a link. If Ciaci is around, maybe she could verify my statements. She is the expert. I would NOT pay extra for the brand name.
0 -
https://community.breastcancer.org/forum/8/topics/828848?page=552#post_5381942
Anewbreath, this is a iink to the area in the thread where letrozole brands were discussed. Look before and after this post of mine for more.
0 -
Hi SondraF,
I like alcoholic beverages every now and then. My MO asked me to keep it to 2 a month on my week off of ibrance. There are others that previously mentioned they can drink 1-2 of wine a week. I would check with your MO. I no longer drink coffee.
We hope you join us in the NED crew too!
0 -
SondraF, I agree with the others. I drink one cup of coffee every morning and never stopped when I was dxd 3 1/2 years ago. It helps minimize headaches and stimulates my bowels. However, I have recently been told my heart rate is too high so I have just started to drink half/caf now. Don't know if there is a relationship between the two or not. I do not drink alcohol so I can't help you there. Quality of Life is so important now.
0
