Ibrance (Palbociclib)
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Jaylea, WHOOPEE!!!
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hi All....I just ended nearly five years of Xeloda...a good run ...for mets to liver...
Will start Ibrance next week with Fasoldex ...I am post menopausal
Am concerned re reports of fatigue...have not experienced to date....I am caregiver for my husband who has Alzheimer’s and I need all the energy I currently have....
Any advice ?
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Jaylea, great news! I am doing a happy dance for you, and all of you sweet ladies who are skiing, and planting, and skating along.
I fear my family is getting so used to me doing things for them that they don't understand when I have a down day. Such a roller coaster!
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I posted March 30th .Was disappointed but that was 4-5 days ago and no responses that I can see from anyone ...A lot has happened since then and would like to share..TY
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lakewoman, here is a response from me! I clicked back to see you on March 30. I do post every once in awhile here as I am taking Ibrance with Fasldex. I also noted that your last post was in 2003 so this like for me is tough. My first BC was in 2012 and this adventure began Aug. 22, 2017.Your tiny photo reminds me of my NZ SIL's partner.
I am off to bed as tomorrow I am looking after a 2.5 year old who is very easy but still must be up early. Let us (and me) know more about what has happened as I see only 2008 in your info.
Marian
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Lakewoman, we would love to hear what your MO said. I think we were all just waiting for you because we are all in different places. I am sorry if you felt ignored, that wasn't on purpose. Ibrance takes several months before results can be seen. I think you will find it is not a difficult medicine to take. Let us know when you experience a side effect that you are worried about. Sometimes I leave this site for days at a time because I don't want it on my mind constantly.
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Ladies, take pictures of those luscious gardens and post them here for those of us who are perennial-deprived. Mike even swept the dirt in my beds to make them perfectly smooth so the ivy and other ground covers now battle for the space. It's all good. I'll buy myself some cut flowers.
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Lakewoman, this topic moves pretty fast sometimes, and pages fly by. I, personally, haven't been on for a while because of Easter - first I was preparing, then I was cooking, then I was recuperating! I only had nine people for dinner, but it felt like an awful lot more work than it ever did before!!
I did notice your post, and was going to ask where in Upstate NY you were - my son went to Cornell, and we spent four years exploring some of the finger lakes area - gorgeous!
Please let us know what is going on with you - even if no one responds right away, people will be following your story, and there is always someone here thinking about you and wishing you well!!
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Jaylea, such great news! So happy for you.
I got the final results from my swallow test. Nothing different. It's a very small area, quite narrow, most likely from radiation but can't completely rule out an underlying mass. Yay! Heading to the doc that did my bronchoscopy tomorrow to see what he has to say... most likely an endoscopy/biopsy soon.
I believe I will soon need a personal assistant to keep track of my medical schedule.
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Since this does move at a fast pace I will not respond individually to my three very own. ha!! personal responses above.I thank you so much for clarifying all this for me..Now to be brief what is MO??? NZ?? Got SIL ha..How do I edit my diagnosis ops new stage IV etc. My lbrance arrives tomorrow..been on letrozole for 5 days....I have mets to lungs and sternum and found out yesterday I have nodule on my LEFTover breast.lol!!! Right mastectomy in 2008.Today I had diagnostic mammogram and ultrasound..Hospital called later.Biopsy scheduled for Fri..I was on this site ..those first five yrs..and very comfortable with it...For now I start on chemo ..have biopsy and. this weekend go with my husband to a boat show..We live year round on a lake near Watertown but have canoed a couple of Finger Lakes and been to Cornell..my guy in school there for couple of yrs..TY again for being there.
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Lakewoman, if you will scroll to the top of the screen, left hand side, then scroll down below all of the dark blue links under the "jump to a forum" and "go" link, you should find a link that says "help with abbreviations." If you click on that you should find MO, onc, etc. That helped me a lot when I first started.
My son lives in Mahopac and loves it there. It sounds like it is not too far from you? I visited last October and loved the area.
Sounds like you have a lot of diagnostics going on to figure out your best course of action. It is good you have help.
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Lakewoman, to update diagnosis and treatments, go to the top line of this page and click on "My Profile" - you can enter new info there.
I see you're way up North - I have a nephew at Syracuse, and it's COLD there - must be even colder by you! I'm in New Jersey, and so ready for this snow to be GONE, but we're expecting more on Friday... sigh.
I remember the day my first bottle of Ibrance arrived, in its little yellow "Toxic" baggie... I was scared, and even cried, and waited until the next day to start it. If I had known then what I know now, 8 months later, I would have danced around the kitchen and happily swallowed that first capsule without hesitation!! My last scan was in January, and showed nothing. As my oncologist wrote to my primary doctor, it was "Excellent" news. The bone met next to my spine - gone. The laceration in the T11 vertebrae - healed. No notable uptake anywhere. She wasn't ready to call it NED (No Evidence of Disease), she'll need another six month clear scan, but it sure made both of us happy!
Any possible side effect you might have has already been had by lots of people here, so don't hesitate to pop on with any questions. I got so much help figuring out how to manage them - so many good ideas that the doctors don't think to tell you! Best suggestion I got: I had a monthly Xgeva shot for the bones, which hurt like crazy, and caused aches for days; came on here and got the suggestion to take loratadine (Claritin) a couple of days before and after the shot - an absolute miracle!
Hoping you find all your answers are good ones...
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Jaylea, YAY for the great news on the scans - I've been thinking about you the last couple of days hoping for good results. May the great scans continue for many years to come.
Lakewoman, MO is "medical oncologist" (also called "onc" by some) as opposed to an SO or an RO (surgical or radiation oncologists). This is the doctor that sees you most frequently and prescribes your treatment. I think NZ is just New Zealand. Welcome to the boards, and don't feel too down if people don't always respond directly. Sometimes it's not easy to tell if a response is expected or someone is just "thinking out loud" or sharing just because. We are still always reading and thinking about each other. Sorry you had to be here, but nice to have you around and looking forward to learning more about you.
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Lakewoman, there was a poster soon after yours named MountainLady. There were lots of replies to her and I got the two of you confused. I thought, what is she talking about? Lots of people replied. So I went back to your March 30 post and scrolled through what followed. There was the other post with all the responses. The other thing I noticed and notice often is that there are so many very different stories. I find it hard (and you can see by my lack of posting) to respond thoughtfully to each situation. Many women here are very good at it, just read through a few pages as I did to see that. I'm in awe at the effort and intelligence invested in this site by my fellow cancer sisters. I'm so glad you are all here.
I set a new record for getting things done yesterday. I actually did three things in one morning. I usually try for one and sometimes two but three? I went to my new gyn and talked about the intractable vaginal dryness caused by the AI's. She was great with lots of ideas. Then I went back to my MO (just went last Wed. for regular follow up) and got my Xgeva shot. Have you all had this issue? The MO appts are every four weeks because of Ibrance scheduling. Insurance only pays for Xgeva on the MONTH, 1 or 3 or whatever number of months. They never come on the same day. So I go back a few days later for Xgeva. Not a big deal this time because when I got done, I looked at my watch and it was 11 AM, the time my old lady friends have lunch. I went over to the retirement center and ate with them. Very enjoyable.
Temps in the 80's here now. Almost too hot...almost.
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Landaffqueen, fatigue is common, but manageable. Your cell blood count will be monitored and your MO will reduce your Ibrance if needed. I was on 125, then lowered after two months to 100 because low hemoglobin, low neutrophils and platelets. My platelets still take a hit, but everything else ok My week off is when I am most tired (on cycle 18). I am sorry about your husband, you are a special woman.
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Landaffqueen, WOW for five years on Xeloda! Hopefully you get at least as many on Ibrance and Faslodex. I think the fatigue issue is highly dependent on the person - for some it's quite debilitating, for others it's barely noticeable. I was on the 125 dose for just one cycle and I didn't quite realize how tired it made me until my second week off (due to low counts) when I suddenly felt full of energy again. I'm on the 100 now and it's a lot better, but even at 125 I never felt that I couldn't do what I needed to do in the day - I just got very sleepy and tired in the evenings and took some extra willpower to get up and going in the morning. Hoping that you are on the lucky side with the fatigue and you can handle everything on your plate without too much extra struggle.
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Lynne, thanks for holding me up lol! But really, I read the things everyone has done or is doing and there are so many that I haven’t ever! I’ve neber had a pedicure. I’ve only had my nails done once in my entire life. I only go to have someone do my hair about every three or four years (I cut it myself). We didn’t ever travel much so I haven’t been to many places. At this point, my life consists of getting up, having coffee, doing household and outside chores, and by the time those are done for the day, it’s time for supper and meds, then bed. My life is a long progression of boring days and boring nights! Shouldn’t really complain though because I am alive! And I’m thankful for that, I just wish now that I’d lived a little different! Hugs!!!!
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Gracie, it is never too late to try new things. I picked up crocheting since I sit a lot. My 2 year-old granddaughter (and her momma) lives with us and I started making these princess dolls for her. (If you look close enough you can figure out they are the Disney Princesses.)Your life doesn't need to be exciting be full. I am sure you are a wonderful, loving person. Enjoy your Wednesday.
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Lynne, you are such a wise sweet lady. I am still learning to live after MBC . Sometimes when I need help I read your posts again and I feel much better. I hope and I pray you and your Dh to have many more years to enjoy life.
Netta,nice to read German again . If I try to say anything it comes out in English. I finished a German high school in Bulgaria, where almost all classes were in German. I still can't understand how I lost everything. Your English is jast perfect. Maybe when one day we go to Germany we can see each other and when you decide to come to USA you can visit us. It would be wanderful. I had this idea before about all of us. We already feel like friends, why not to meet somewhere and have fun together and talk and talk...
Pat, your Dh reminds me so much of mine. This could be him, but I wouldn't be able to hide my disappointed face.
Love and hugs and prayers. Elena
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Hi ibrance dancers. Welcome mountain lady. That’s one thing I miss about living in New York was my perennial flower garden. It was a work of 26 years of love, hyancinths, foxy digitalis, hydrangea bushes, black eyed Susie’s, echinacea, lilacs, mints, dogwood trees, too many to name. Colors galore. Florida has perennials. It nothing like the north. I think because of the killer cold.
It’s a pleasure to hear about skiing, travels, and gardening from such a bunch of tough ladies.
Tanya
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Jaylea so happy for your good news! Yay!
I received some unexpected gene results yesterday. After doing a study in DNA sequencing that showed a BRCA signature / high DNA repair deficiency and a RECQL VUS and being referred for further genetic testing, I found out I am a PALB2 mutation carrier. PALB2 is essentially like a BRCA3 in a sense with a 58% chance of developing breast cancer and increased risk for ovarian, prostate for men and pancreatic cancer. I am shocked after 6 plus years to finally learn what caused my cancer at 28 years old. I may be eligible for PARP inhibitors down the road (whenever they can be accessed in Canada I guess)
As for Ibrance... I just started 75s last night with neuts at 1.1 (after a two week break) ...I have been having headaches the past 2 weeks now. Temple, front of head... It happens daily and of course my mind goes THERE. I read that PALB2 outcomes are not great and in one study all women with PALB2 mutations had mets to the brain. I am f-ing terrified.
My next CT is April 23 (Joing you ThereisHope4Us) and I might ask to have my head CT'd in light of my recent headaches. And now knowing I'm PALB2+.
If anyone has headaches as a side effect of Ibrance (even in their off weeks)I would sure appreciate knowing it might be just the drugs and not a sign of my worst nightmare.
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Ashlyn, I get headaches from letrozole. I noticed when I took a month off both I and L, I had no headaches. Headaches is listed as a SE of letrozole but not Ibrance. I've always had problems with headaches when artificially adjusting hormones, even when I did HRT many years ago. I wouldn't go worst nightmare yet.
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Tanya,
Hoping these pictures warm your gardening heart...I am in the Midwest and spring seems far far away in another galaxy. My dear husband bout 2 $20 "greenhouses" for eachbhiuse (we live 3 hrs apart). I set kine up in my garage and planted extra bulbs for cutting flowers. An experiment. I planted over 60 bulbs last October and they have sprouted but minimal sign of blooming so far.
These tulips amazingly bloomed in the $20 garage "greenhouse" and I could not be more pleased. This is my reading chair in the corner of the sunroom and is one of my favorite places. I feel calmer and happier just looking at the picture and even more so when I get to be in there resting my mind and body. The kitties love to join me there too.
Hoping these glimpses of spring can help someone smile soon. While there is much to be sad and fearful about, there is much to be happy and grateful for too.
Warmly, V
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Jaylea, I just saw your post of the good news! That's so amazing to hear! I get nervous every time I go to the MO's office...always try to read the doctor's facial expression, but most of the time it turns out to be nothing except the day that I was diagnosed. If I make it to Hawaii after the upcoming scan result, I will definitely share the good news here with you all.
Ashlyn, I know how you must be feeling about the headaches. I felt the same as well yesterday and was so fearful that something is up there too. Are you drinking enough fluid? For me that makes a huge difference, I have to remind myself to drink at least 8 cups of water a day. It helps to flush out the toxins and keep dehydration headaches away. According to my blood test results, I am often dehydrated. Don't think so much either...it's only ONE report that shows brain mets from all the participants of the study. I am sure it's just a small sample of the overall population who have that genetic mutation. I recall reading somewhere that 1/3 of the general population will develop cancer in some point in time. Everyone is at risk regardless of their genetic make up.
I had my first Xgeva injection today. Read a posting about taking Claritin in advance to reduce the side effects. So far so good...we will see about tomorrow.
The fatigue on Ibrance hasn't been too bad. I find the most serious side effect of this illness is the imagination of the mind. I read that the key is to quiet the mind. I try to stay focused and not think beyond what I know and feel today. Hopefully it will help me get through the journey ahead....
Hugs to all!
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Blueshine: I shall be happy to meet you in person, if you find your way to Germany. I am easy to visit, because I live in Frankfurt, the city with the biggest airport in Germaby, where most long distabce flights will arrive.
Ashlyn: Are you sure that your headaches are caused by the meds? I always get my headaches from tense muscles in my back, which irritate some nerves. Laying in bed or on the couch for extended periods of time is not helpful for me. On the other hand, fatigue does not allow me to be on my feet all the time, either. But I found out that a nice walk already helps a lot to loosen up a bit. Additionally, I get massages and physical therapy and do some back strengthening exercises (not as often as I should, though). Still, I have to take ibuprofen for my headaches about 1-3 days per week.
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Ashlyn, I am on cycle 30 of Ibrance and I do get headaches from it. I had a brain MRI done because I worried about brain mets. I am all clear. It is definitely the Ibrance, and the headaches are usually my last week and my off week. But its worth taking a look to be sure.
Claudia
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I loved seeing the tulips and the crocheted princesses! This Dogwood is the only flowering thing I have in the yard now but I do love it!
Have a happy day, friends. Spring has backed up a bit here but things should warm up again soon.
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Jaycee - While I’m no longer on Ibrance, I did have the same issue w the XGEVA shot timing and asked about it. The MO’s office said I could get XGEVA on day 30 minus 2 days and that’s what happened each month for 2 1/2 years. And I schedule my MO appt for that day also.That was paid by private insurance. Now that I’m on Medicare, XGEVA has still been paid for on day 28. Hope u can get it down to one visit to save some time.
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The flowers and dogwood are lovely....can't wait for spring to really arrive in VA!!
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