Ibrance (Palbociclib)
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Always glad to hear everyone's good news. Never feel guilty about success. I'm cheering right a long with you.
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Thank you all for your good wishes and encouragement for tomorrow's scan.
Nonahope, I'm so sorry to hear about the bone marrow results. I pray that taxol will kick this progression right out of that marrow. I wonder if you will be a candidate for a different cdk4/6 inhibitor once you finish with taxol.
Amaranths and JFV so sorry also for your bad news. Hang in there things can get better.
Jaycee and Nkb, hooray for your good news.
Sending prayers for all here. Hugs,
Faith.
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Faith, Janet, NKB, doing happy dance for your good news. Keep it coming!
Amarantha, sorry, I missed what your bad news was? Sending strength your way.
Hope, boo to your news but now you have answers for your low blood counts and can focus on treatment. Wishing you all the best.
JFV, crap, crap, crap, prayers for clarity as you decide on your next move.
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HI Jaylea, my bad news from PET scan (of 31 Oct) - in the six weeks since the last (almost NED) PET scan, the cancer has returned and mushroomed - left breast scar, right breast, many lymph nodes on the right side, the "sacrum" (I think that means tailBONE), lymph nodes under the rib cage (and probably more since they didn't tell me all). I knew the cancer had returned because I can see it spreading across the skin of my chest. But I did not expect it to be all those other places. Anyhow I've only been on Ibrance one week. Biopsies today to hopefully show whether the cancer is still estrogen senstive.
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JFV and Hope.... I wish I could reach out and put my arms around you right now. I'm so sorry for your bad news and I can only hope that new treatments bring good results for you. I think we're all saying pretty much the same thing but our hearts are hurting for you, as intoLight says.
Jaycee....so happy for you and you're right. We needed good news. I understand how you feel about guilt. I feel so lucky at the moment. I know that we never know what the next scan will show but right now I'm ok. My view on this is that we should live every happy moment as fully as we can, while we can, and share our love with those who are having a bad time.
Nkb...that's great news. Long may those TMs continue to fall until they reach rock bottom.
Maire.....my fingers are going purple but I'm still keeping them crossed for you.
Ciaci...my oncologist's plans are the same for me. I plan on staying optimistic about this and believing that Ibrance/Letrozole will gradually kill,kill,kill. I have monthly Denosumab injections into the tummy.
I'll jump in with some scraped up good news....not a scan... just that I've been feeling really well for the last few weeks, better than I've felt for the last three years. I was ill with an unknown problem for several years before breast cancer was finally diagnosed as it didn't show in mammograms. I hope this well feeling translates into improved tumour markers at my next visit in two to three weeks' time.
Sending you all love
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I echo the sentiments of all and am sending great love, prayers, and hope for us all.
We head to VT on Tuesday for our son's wedding in Brandon to an adorable girl whom I adore. My diagnosis to Stage IV was in February of this year, and I thought at the time that I hoped to make it to this wedding. MADE it and feeling good. We truly do have to savor and appreciate all of the good times and the good people.
Love to all....
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Thanks you all for your well wishes and support. And I'm so very happy to hear all the good news!! And so sad to hear all the bad news...but, were are here for each other no matter what.
Faith....When the onco called yesterday, he indicated Taxol will probably be for six months. He thinks that will take care of the low blood counts and then I would probably go back on Ibrance/Femara -- at least, I think that's what he said. I was taken aback when he gave me the news. I will see the NP this afternoon and she will go over everything with me. I'm in a better frame of mind this morning...who knows how I will be this afternoon. I remember with my initial round of chemo in 2010, I had to have a bone scan, CT and Echo before I was set up for the infusions. I doubt I will have to have the scan and CT, but I'm wondering about the Echo.
JoynerL....Have a wonderful trip to Vermont. I'm so happy that you feel well and can enjoy all the festivities to the hilt!!
Have a good day, ladies....I will check back in after I see the NP. Even though I will not be on the Ibrance combo, I will still stay on this board. In the short time I've been here, I feel like I really know you gals and want to continue to follow your journey and cheer you on.
Hope
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Hi everyone! It's been a while. Thanks HLB, I'm in the Dominican Republic but will check that out, although, if Xgeva is anything similar to Zoledronic acid, I think I'll pass.
Leapfrog, thanks a million as always for your support.
The zoledronic is starting to wear off so to speak and I've been eating and feeling better with the occasional regession to a lesser appetite but at least I'm no longer starving or rapidly losing weight as I was. It's a bit scary to have one less weapon to use against this cancer, but I wasn't gonna be able to handle the drug monthly or even every three months.
I'm still getting the calcium IV infusions at the E.R but now daily instead of twice a day. My veins have behaved well after the initial hematomas and hardening. I'll be switched to a new oral calcium next week to see if my stomach can take it. I'm afraid it might make me lose my appetite again (I do every time my gastritis is upset by something), but we'll see. Still doing radiotherapy and waiting for the Ibrance after that which is also a bit scary after this first treatment experience.
I read someone said they stopped ibrance before getting a scan? is there a reason for that? As I'm expected to get a PET scan as soon as I get my visa anywhere around next month, so that I don't start treatment before doing so if there are any concerns. I'm not getting much on the internet so I might miss the answer to that question anyway but it was nice to "see" y'all and I wanted to step by, say hi, and give you some updates.
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Best wishes to everyone,whether Ibrance is continuing to work for you, or you need something else. At least there are alternatives available. I am just completing a five day retreat for cancer survivors. Five days of wonderful food, music, fellowship, massage, meditation, etc. Inthe beautiful coastal mountains of British Columbia. The transition to he real world will be a challenge. I hope to carry forward the spirit of hope and healing from here.
Jo
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Nonahope and JVF, I just read of the bad news, so sorry to hear that, you've been such wonderful sources of support and information. I wish you the best in regards to what follows.
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Joyner, after being dx in March of 2016, my son got married in Nov. 2016. I hadn't traveled in quite a while and it was perfect. My cancer was not mentioned by anyone for 10 days. It was in FL so we went to the beach after the wedding. (I assume VT will be colder.) I wasn't sure I would make it either but I did and they just bought a house. The milestones keep happening and we keep being here. Now for grand babies.
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Ceci, I get a PET scan every 3 months and have never stopped ibrance for it, so I am unsure where your information comes from unless it is a different type of scan? I have never heard this. It has been fine and my results are good.
Jaycee, grandbabies are the best--a real blessing to look forward to! The wedding picture is lovely.
Amarantha, I am so sorry to hear your results--another pain in my heart.
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Dear Into Light, jaycee, ceci, hobbes, nonahope, JoynerL, Leapfrog, Jaylea, Faith, JFV, I am so glad to be able to share with/among you, it makes a huge difference to have somewhere to be understood. I'm finding myself more and more "protecting" the people in my life from worrying about my plight, and talking about it little, particularly when I myself am worried.
Now I have a weency question : we are told Ibrance will lower the neutrophiles. I just had a blood test which showed they have gone up quite a bit over the normal marker since last week. Gone up instead of down. Weird ? I read it means an infection somewhere. Hmmmmm.
IntoLight, I love your signature sentence. I don't actually believe in God with a capital G, but I know exactly what you mean anyway. Something particular about being in our situation - the feeling of light and sharing grace, and being able to see more light and more grace than ever before, makes something like a silver (no, golden) lining in the tragedy of our situations.
Jaycee/Janet, I love the beautiful wedding picture you posted. What a consolation. Congratulations for all the spectacular milestones.
Leapfrog, feeling better than in a the last three year time is wonderful news !
Courage, happy feelings to everyone.
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Gorgeous wedding photo, Janet! Thanks for posting. We need to lift like this!
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Nonahope- Thank you yeah I have been anemic since I was three just taking an iron tablet to help boost it a little better. Yeah my hair is still thick which is good so hoping it doesn't thin out if it does oh well. Haven't had nausea I did with chemo though ugh. Sorry to hear your news I do my first bone scan since being diagnosed in a few weeks. Yeah they caught it and they are trying to control it. I am glad she has me on a good path so far.
Tanya_Djamila- Yeah I did ask about the hysterectomy but since my surgeon went feeling around to make sure there was nothing of concern they are going to do the laproscopic. Thanks for the heads up though.
Leapfrog: Yeah I will take the mouth sores and those things into consideration with the Ibrance and keep an eye on it. Yeah using any volumizer might help too. I cut my hair a month ago because I was doing rads.
Good news on my front is I don't have to see Radiation for right now they are going to keep my followups on an as needed basis. Which is good. I meet with my surgeon this week to do my port (Yes I never had a port even with chemo) but to do these infusions to strengthen my bones up we gotta put it in and will make my blood draws a lot better. Getting the port the same day they remove my ovaries I know I am a contradiction lol. Also have my pre op anesthesia appointment on the same day. The week after that is going to be tough. I have Pre op visit with my ob surgeon, on top of getting the picc team to do my iv for my ct and bone scan first one since my back surgery and since they found my lesions in my back. So hopefully I will have good news to report and I see my oncologist that week too. So yeah.
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Hi, I’m on cycle 2 of Ibrance - since I started taking it I have been so fatigued I can barely leave the sofa (never mind the house!) I’m 71 this month so I’m not sure if I’m more tired due to my age of if it’s the Ibrance? Do you know if this will improve? My oncologist says it’s because of the spread to my liver and possibly not the Ibrance. There are only 3 other people in my area on it so the nurses don’t have much to compare it with to give me advice. I guess I just want to know I’m not alone with this fatigue and it will ease! Thanks for listening lovely ladies, I hope you are all fighting strong!
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cchilders, you make me tired just reading your post! One step at a time...
Carolepearson, ibrance hits all of us differently. Sometimes it is the medicine you are taking with the ibrance that enhances the fatigue. I would have your MO check on anemia also. My fatigue issues did improve, and at my 18th cycle, I am doing pretty good. I even did Costco by myself yesterday which is a task!
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Thanks intolight - I don't take anything with Ibrance as I'm oestrogen positive.
Glad there might be an improvement and you are doing well on it
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Good afternoon...
Well, I'm back from my consultation with the NP about my chemo. I will begin Taxol next Thursday. I will have infusions every week (for three weeks) and then be off a week. I can skip Thanksgiving with no concern. The drip will be about 1-1/2 hours....not bad. Oh, and X-Geva might be in the picture. They will monitor my labs closely with each infusion to see if Neulasta might have to come into the picture. If felt necessary, I will have scans after 3 months...if not, then after 6 months. So, bottom line is that the Ibrance/Femara failed for me. The cancer cells in the bone marrow are breast cancer cells. So, I guess this treatment will go on until it stops working...then on to something new. She talked about immunotherapy which may be right around the corner. I felt relieved that there are many more options after each failed treatment. She said I'm in a good position for further treatments down the road....I'm just beginning. She did recommend Claritin for the aches and pains I "might" have with Taxol. They will put Benedryl, Steroids, and something for nausea in the cocktail. So, I felt ok after leaving the office....I love this group of physicians and NP's. Bad news was that she couldn't promise I wouldn't have to have another bone marrow biopsy....OUCH!!!!!
I might try to take a little nap...it's been a long day!
Hope
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Hi Nonahope, well that's pretty intense, yet comforting in the degree that it sounds like your team is really on the ball and want to pull out all the stops for you. I really like that she believes immunotherapy might be right around the corner. I read an article on this today and it seems they are getting closer to something that might work for breast cancer. Do you have any idea why Claritin might help for aches and pains ?
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Amarantha, I was told to take Claritin for two days before, the day of, and two days after, my Xgeva shot every month. Apparently a lot of these drugs release histamine, which causes the bone pain. I suppose different anti-histamines might work, but I was told Claritin (generic is loratadine) was the best, so that's what I take, and I never feel a thing!
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After on the sideline reading this thread for almost two years, I finally am able to join! Onc and I decide we will try Ibrance and Femara as the next treatment, because Femara is the only AI I have not used. Nurse handed me the famous purple welcome kit and a free bottle of 125mg Ibrance. Wow that’s $10,000 savings right there. I will start on Monday.
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Leapfrog, talk about good news-feeling the best you have in three years is worth celebrating!
Joyner, weddings are the best, especially in Vermont in the late fall. I envision crackling fires, warm drinks, plaid throws over your legs. Share pics, please.
Amarantha, oh, sweetie, sending you extra prayers. I totally agree with you and Leapfrog about this forum. It is such a blessing, allows us to vent to those walking on similar paths, which saves loved ones from the ugly details.
Hope, sounds like you have a solid plan and a great medical team. Here's to Taxol kicking @ss and taking names, dear friend.
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nonahope, I'm so sorry that Ibrance has failed you but it sounds like you have a good team who know their stuff. There are lots of treatments out there and I also believe we are close to getting immunotherapy treatments that are proven to work. I also think I read of a targeted therapy similar to Ibrance that works on bone mets. I'm glad you are going to hang around and let us know how things are going for you. You are in my prayers.
Carol Pearson, it's hard to believe that you are not on any kind of estrogen inhibitor like letrozole or aromasin. That is what seems to help the Ibrance work. If you really aren't taking anything else, I would question your doctor about it. All the literature on Ibrance says to take it with letrozole or a similar drug.
Cling, welcome to the Ibrance thread, I hope it works for a long time for you. Many here have been on it for two years or more.
Jaycee, beautiful wedding picture. We have to enjoy all these milestones as they come.
Joyner, enjoy every moment of your sons wedding and just forget about cancer for awhile. Looking forward to pictures of that special day.
Ladies, I'd like to address all of your concerns but it's been a long day and I have to close here. Had my lung CT today and still waiting for results. Hoping no news is good news.
Hugs and prayers for all,
Faith.
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Cling, I never received a welcome packet nor a free bottle, so it is good news right there that you have a great team.
Faith, here's hoping for a great result.
I am having a rough day so I will sign off and go to bed...happens.
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Carolepearson, you definitely want to speak with your oncologist if you are not on a hormone treatment with the Ibrance. Are you perhaps getting Fazlodex shots instead of the daily AI? The trials that led to FDA approval included hormone therapy. Sorry to get in your business but this is important.
cling, how wonderful that you're getting the Ibrance at long last! And fatigue should always be free, right, girls?!
For anyone whose oncologist blows off fatigue caused by Ibrance. It is real and life-limiting for many of us. (I'm 68.) However, I do remember the times I took an AI by itself and I had fatigue then too....more like really tired at the end of the day. This is often being tired even upon waking in the morning. Some days are better than others though and there is always joy when you look for it!
I'm still glad to be in this Ibrance dance and wish you all a lovely week-end.
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Pat: yes, fatigue is always free of charge for any cancer treatment! 🤣🤣
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Nonahope.....I'm glad you're staying with us. We'd miss you on this board if you left for a different one. Your attitude is admirable as always....positive and strong.
Carolepearson...I've never heard of anyone using Ibrance without an AI. Ibrance is a targeted therapy and is used as an adjunct to AI for oestrogen positive BC. Please ask about this. I don't like giving advice without knowing all the facts but this sounds so unusual that I see Pat is also concerned about it. And yes, Ibrance and Letrozole both cause fatigue. By late afternoon, I'm barely coherent and at night I just fall into bed, tired to the point of just falling asleep in whichever position I land in! Re the fatigue, after nine cycles my experience is that I've just become accustomed to being fatigued all the time and I either carry on through the fog of fatigue or give into it and rest, depending on how bad it is. Don't worry about it, though. We can't let these side effects bother us too much or it would do our heads in!
Faith...good luck with your scan results. Praying for you.
IntoLight...I hope you're feeling a bit better today.
Amarantha...which part of the cycle are you with your neutrophils going up?
Jaycee...the wedding pic is gorgeous. It's so good to see love, happiness and belief in the future.
JoynerL.....enjoy your son's wedding and forget all the bad stuff for that time.
Sending love and sorry if I've missed anyone. Good luck everyone having scans or tests or getting results. My prayers get longer every night and I never used to be one for praying. I believe in faith and trust and god with a small G but it's gradually changing to a slightly different belief now.
Love you all .....hugs....
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HI Leapfrog, I have taken just 11 days of Ibrance (and Faslodex). The last blood test showed the impact of just ten days. Oh well, just talked to the oral therapy nurse (calls once a week) she said its nothing. It's never anything, LOL.
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This is very interesting....an article about using super computers to determine best treatment options. In this case, the super computers came up with a treatment protocol which has been very successful for a patient after four failed lines of treatment selected for the patient by oncologists. This may well be part of future treatment.
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