Ibrance (Palbociclib)
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NettaGER, welcome to this site although I am sorry you have to be here. It sounds like you are doing everything right. Fear of random pains is part of the game, but do not let them alarm you as they may come and go without meaning. Also, do not hang too tight to your tumor markers. If you get a chance to read back a bit you will note some of us find they often jump around while the Ibrance is doing its work. So look at the overall trend with time instead of each specific marker. I will let the younger girls chime in on the pre-menopausal stuff as I am almost 65 and had a oophorectomy at age 35 due to endometriosis. I trust you will find your answers and the support you need from us here.
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NettaGER I read your post with suspense and interest. I'm so sorry you have to be here, but very glad for your company. It sounds like you are responding well to the treatment. I do not have a uterus so it wasn't obvious whether I was menopausal or not - 53 at first diagnosis - but tests showed I was still nowhere near menopause, therefore am still on treatment to shut down the ovaries while on Ibrance and Faslodex. Well ... Happy New Year anyway :-)
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Welcome, NettaGER.....we are sorry for you diagnosis and situation but glad to welcome you among this supportive and knowledgeable group. Like IntoLight, I am older (about to turn 72). I am about to begin cycle 12 of Ibrance, Faslodex, and Xgeva. I am doing well. Unlike many, I was in remission for many years. Original diagnosis and treatment in 1991 and metastasis to MBC (in bones, only, so far) in February of 2017. Mine, too, was found by accident through a CT scan for something unrelated.
On a happy side note, I had my scans (CT thorax) yesterday, and all is stable. No change from September! HOORAY! I was, of course, praying for something miraculous, but that goes rather without saying. I feel good, if a bit tired sometimes. I am grateful for this drug combination.
Hugs to all, especially those about to have scans. Happy New Year, all!
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And welcome, JoT! I missed your post and am just seeing it!
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Thanks for the friendly welcome and all the the kind words!
I will keep you updated on what my appointment at the MO will bring tomorrow.
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joyner. I had forgotten how close we are in age and initial BC DX. I just turned 70 and my first DX of BC was in 1992. Also, I started Ibrance/ femara one year ago today.
I do have mets in lung, chest and liver. My scan will be in one week. I hope it will show continued improvement in lung and chest. Also, that the liver mets will continue to show no uptake, like they did in August. The result of exceptional response to y90's.
But, I absolutely have scanxiety. I'm trying to keep busy so I won't think about it so much. Taking Christmas decor down is on my list. I'm having trouble getting inspired to do that. It sure isn't as fun as putting them up. Even if I do progress on this TX, I know there's something else to use. Somehow, that still seems scary to change.
It's good to know that others on this thread know how I feel.
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Grannax, I surely know how you feel. 27 years between initial diagnosis and MBC!
I found that the multiple jobs associated with Christmas kept my mind off of my scans on Jan 2nd. A blessing!
New today about Kisqali:
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I’m also a little older, 61, first diagnosis in 2007, got almost ten years before progression
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Gracie I'm 60 and I got 13 years from first diagnosis in 2003. Found this round in April 2017 quite by accident after a fractured disc in the spine, MRI revealed a lesion then PET showed mets to rib, hip, ovary.
Welcome nettager very knowledgeable ladies in this group. They've helped me immensely.
Tany
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Lots of us old folks here today! I'm 68 and coming up on 25 years since my first diagnosis. In March, I'll be 6 years past diagnosis with MBC. I'm so thankful each of you has done what you needed to do to survive the disease most people fear most. You are warriors. You are pioneers. You can do whatever you need to do until a cure is found....or maybe you're right in the middle of achieving your cure. Either way, God has plans for you.
My granddaughter and I made art this week. I'm thankful beyond words.
And I love you. PatG
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I saw my oncologist today. She said that no one knows why the low neutrophils that we experience are not associated with higher rates of infection. Somehow the neutropenia (low neutrophils) caused by Ibrance are different from the neutropenia caused by traditional chemo. Thank God, as I almost died from febrile neutropenia seven years ago when on docataxol.
Jo
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The fatigue hasn’t worn off for me. I have days that I feel quite good, and many others where I feel like I’m about to come down with something or just feel a general fatigue that I can manage through. I was to full time, and having had two weekends off for the holidays was such a blessing. I only had a day or two of true fatigue and having the time to rest was so helpful. Today was my second day back after the break and I feel like I’ve been run over. I know I’d be tired from work and being a single mom to a young son even without the cancer, but all these meds add a layer for sure.
What helps for me is to outsource what I can (laundry) and try to batch cook as much as possible. I was given a rx for Ritalin to try. I’ve used it twice and it’s helpful but I loathe adding another daily medication. Exercise helps so much more as does getting decent sleep.0 -
Well, my appointment at my MO today was not very successful:
My neurophilic counts are only 0.94 after my week off Ibrance, therefore I need to take a further week off. Not extremely surprising though, since I took 17 days of 2 different antiobiotics during the last 4 weeks cycle due to nose infections. I will get blood drawn again in 1 week to see if the values improved.
My CA15-3 rose during the last 8 weeks from 149 to 162 (starting value at DX in 09/17 was 38). But my CEA went down from 4.7 to 3.5 (starting value 3.9). Since I received the results from a nurse after having already talked to the MO, I do not quite know what to conclude. I do not know, if I would want to have my next staging preponed to now or rather wait until the officially scheduled date on Feb 20th. My MO is supposed to call me later this afternoon to discuss the values. I will see what he concludes.
I hate these cliffhangers. Why can't it be just yes or no?
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Jen, I feel you with the fatigue. I can go weeks where I feel pretty good then weeks where I feel like I can barely function. Can't seem to find any pattern to it. That being said, I've been on this since April 2015 and stable so I'll take it!
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Lynnwood, I am right there with you. The side effects have no real pattern to it. They are so random. I too, can go along feeling good and then wake up one morning feeling like I was run over by a bus. In that respect chemo was better. You know exactly what to expect and when. Like you, I have been on it since October 2015, and am stable. I'll take it. Besides, chemo almost killed me. I have taken it off the table, so I am very grateful for all these new treatments coming out.
Hugs and prayers,
Claudia
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Hello Ladies,
Just a little word to thank you (again :-) ) and tell you, you were right. Ibrance is far more bearable than the chemos I had previously. I'm now on my third week and the first blood tests showed I'm bearing Ibrance quite well. It's still much too early to know if it helps, but at least I'm feeling well.
I'm so thankfull I found this place. Not only for the advices and shared experience, but mainly for the kindness of all these answers. It is such a warm welcoming place ... where I feel at home. (although I'm still struggly somewhat with the English language).
I send you all love and hugs hrough through the clouds.
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Yaelle, I'd love to see us try to communicate here in German! You handle our difficult language extremely well. I'm so happy that you're tolerating Ibrance well and pray that it continues to be easy. The wonderful thing is that it's probably already working to dissolve the cancer. I had a scan at 3 months and the response had already been remarkable. I look forward to hearing how well you do.
Love to you from PatG
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Wonderful news, Yaelle, and hugs back to you through the cloud!
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I was diagnosed in July 2017 with BC met to T12 and T7, my onc put me on tamoxifen for 3 months then switch to Ibrance + Femara. I’m now into second month of Ibrance+ Femara, but I feel my lump though get abit smaller but still as hard as rock. I would thus to check if anyone has any view if I’ being under treated? I’m 43years old and ER+, PR+, HER-. My onc said stage 4 so no hurry for surgery and chemo can follow if ibrance not working...As I don’t have any pain from my back so my onc says no hurry for radiation..
Also, can anyone suggest any complimentary treatment with ibrance/Femara? Or any food which work for you? Below is my daily routine since diagnosed but things are just now quite working for me, any suggestions on what else I can do?
I drink 250ml carrot juice in morning before my morning walk. Then breakfast organic Low fat yoghurt with muesli, flat white and 2 pieces of light toast brown bread. For noon, I drink 300ml organic veg juice (kale,spinach,broccoli, lemon, celery). Lunch noodle with veg added with tumeric and black pepper, egg, then follow with banana, strawberries, blueberries, raspberries and strawberries. Before I go for my evening walk, I drink another 350ml of organic veg juice (kale,spinach,broccoli, lemon, celery, beetroot). At ard 7.15pm, I Take the Femara, at 7.30pm I have my dinner brown rice with steamed salmon. At 7.50pm, I take Ibrance. At 10pm, I take calcium. Wake up at 5,30am and start another same day.. anything wrong with this routine?? I eat organic and exercise diligently but my progress is slow..Help anyone pls..
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I admire your discipline hopefully 77. I have lost my way and have not been caring for myself like I want to. Trying to bring back focus on myself and self-compassion. I will be following to hear other peoples food recommendations as well.
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Wishing everyone a happy 2018 filled with minor and major miracles. I got a cold that knocked me on my keester for a few days. I'm on the upswing now with just a lingering cough. Thankfully I got the Christmas decorations down so I could languish at home in peace. (Grannax, just sayin').
Joyner, clapping happily for your stable scans. Such great news!
Grannax, praying for positive news with your scans. Do you feel good? If so, I'm betting your scans will show good things.
PatG, sounds like you're back to full health, so glad to have your uplifting voice back with us!
Singlemom, new year is perfect time to reset your focus. I'm convinced the overeating, sweets, lack of sleep of the holidays led to my crash and burn. I went shopping today for healthy foods and will start exercising again.
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Jaylea, sorry about your cold. Hope your cough clears quickly. I also got a cold that went into the beginnings of pneumonia so I went in to the Dr. I am struggling to have any strength although my cough is doing better. This has been a tough year. for sickness at my house thanks to my 2 year-old granddaughter. I don't eat as well as some of you post although I try to eat healthy. I don't have the discipline of Hopeful. Right now I have no appetite so I do well to eat anything.
Joyner and Pat, I am glad you are having stable scans. Thanks for sharing.
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Thanks, Jaylea and IntoLight. I'm on a mission to have everyone with a cough get some prescription Tessalon Perles (sp?). They do more good than any of the cough meds I now have in my cabinet, even the narcotics. They do (like most cold medicines) cause you to get dehydrated so, besides the Perles, the best advice I could give is to go in and get IV fluids. When I finally was well enough to go to the doctor, the fluids helped tremendously. Just FYI, after the terrible cough started, I found it hard to get comfortable due to pain around my port. Turns out extreme coughing can cause clots. The port wouldn't work when I went to the doctor...first time in 6 years...and they had to use a clot buster. You learn something everyday!
I hope all of you are wearing masks and avoiding touching pens, doorknobs...anything....especially at the clinic.
Be well! Here's to great scans for everyone having them this month!
PatG
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Thanks singlemom1, but I’m so afraid that what I’m doing may not be helpful at all to my body.. but will stay strong and positive!!
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Thank you Patg, Unfortunately German wouldn't help me a lot. I was raised speaking French and Dutch
Hopefull77, while I was on Femara I had a complementary Homeopatic medicine called ISOFemara, which helped decreasing the side effects (especially joint pain). But I must say I wish I could be as disciplined as you are ! I'm "trying" to eat healthier, and I know I should quit sugar ... but this is extremely complicated in this period of the year. I'll start again after the 6th of january (want to eat my part of the Epiphany cake first !).
I'm sure what you do is helping a lot ! Progress needn't to be quick, most important is to keep doing right ! ... what you're doing perfectly.
Sending you and all ladies here big hugs.
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PatgMc, so glad you are feeling better! I totally agree with you on those Tesslon Perles(sp), I used to get Bronchitis frequently and they were the only thing that helped with the cough! Like you, I tried all kinds of otc and prescription cough meds. Nothing worked like the pearls!
Joyner, Great news! Belated happy dance for you!
Hopefully, What you are doing sounds amazing! Maybe a little more protein would be good. You make my efforts look pitiful. Keep up the good work!
Hugs and prayers,
Claudia
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Yaelle I'm happy you found the Ibrance less taxing with SE than the other chemo.
Hopeful77 you have great discipline and a fantastic regimen. Unfortunately for me I do good for a few days and then get some craving for a chocolate cookie or something. My WBC was low so I'm following that diet to bring my counts up lots of green veggies, carrot juice, green tea and fish with omega fats. sometimes I do eat nuts and pumpkin seeds for added proteins and antioxidants. If anyone can share anything to help my efforts I'd appreciate it.
My husband was sick and I went in to the doctor immediately when I started sneezing and they prescribed tamaflu for me. We both had flu shots but he did get a fever chills aches etc. I took the tamaflu for five days and my sneezing subsided and was gone along with the cough by day 4.
Congratulations on your good news Joyner, thank God.
Grannax good luck on your upcoming scans.
PatgMC you always encourage me with your results and warrior spirit.
Tanya
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Yaelle, it is funny that we meet in an American forum though we are geographically a lot closer. I am from Germany.
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NettaGER indeed it's quite funny indeed. Although not that much, as I couldn't such a great site in Europe (neither in French, nor in Dutch).
Unfortunately I forgot everything I learned in German except for the Dativ Prepositions which I had to copy so many times that I still know them. But this doesn't really help in conversations.
Tanya, I must say, I've got a similar problem with chocolate and biscuits. I really cannot keep on a healthy diet all the time. So now I bake my own biscuits using only pure cocoa (unsweetened) and stevia (100% natural) instead of sugar. I also chew bees propolis everyday, which according to my doctor has antibiotic and antiseptic properties, but mainly distract me from grasping at cookies.
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Hi Yaelle, I think exercise helps with joint pain, so I religiously stick to my walks twice a day.
Bigbhome, I willtry to add chicken breast and some red meat. I also get protein from milk, but I actually read that farms milk pregnant cows so very high estrogen, so even if I buy organic it does not help..
Tanya, I have to quit all my favourite cakes, chocolates and ice cream, so I replace with lots of fruits.
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