Ibrance (Palbociclib)
Comments
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Another article about the Keytruda study:
http://abcnews.go.com/Health/wireStory/tumor-gene-...
Wouldn't it be great if even one of us became a candidate for this?!
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Good new for me! Finally after 5 cycles of Ibrance + faslodex, my tumor markers went down to where they were 2 months ago. Still fairly high, just over 3000, but if the same thing happens again this cycle that would be great. My MO still has me scheduled for another CT scan with contrast at the end of August, only 2 months after my last one. Maybe he'll change it if the CA27.29 keeps dropping, my insurance company won't pay for PET. I look forward to my Xgeva shots, I always have more energy after having one.
Z, tape worm, really!
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Great news Cive.
For me, I think Karma is biting me in the behind big time. I remember telling everyone I was like our friend Julie on the Ibrance ad. Ha! I couldn't skip anywhere at the moment - get winded crossing the room!
Cycle three is turning into a real uphill battle. While my lung finally appears to have dried up, over the last couple of weeks I have had lots of coughing, some pain in the affected chest, headaches, occasional chills (no fever except once when it was just under the threshold), nausea and lots of SOB on exertion. Just like Julie?
Had a chest CT today but no results yet. My MO's office had to move heaven and earth to get me in for the scan. It's just not that easy here. This is a follow up to a chest x-ray which indicated consolidation in the lungs, whatever that is. Touch of pneumonia?
Thankfully I am starting to feel better with the exception of the SOB. But my blood work at the halfway point came back with low neutrophils and low hemoglobin which would explain the breathing issues. I see a potential dose reduction in my future unfortunately and I'm already down to 100 mg. Darn...
Here's hoping for lower TM's for you Cive!
Claire, welcome back. The trip sounds amazing and one for my bucket list. Wish I could join you in Paris but my palate would waste an epicurean adventure at the moment. Maybe soon.
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Geez louise Sadie, you deserve better! It took me 5 cycles to get that TM reduction, perhaps you just need a few more cycles. I'm off for two weeks again at 125 mg because my white count was too low. I'm going to ask them to reduce it to 100 mg.
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PatgMc, thanks for always finding these interesting studies. Reading this one on Keytruda gave me an idea. Because my grandmother had BC and mine came back 25 years later, and since we have three daughters, my MO suggested I have BRCA gene testing. Of course, being concerned for our DDS I agreed. The social worker who arranged the testing and paper work and gave me the results which were negative for BRCA, thank goodness, told me there are other genes they can test for from my sample. They had already tested for some abnormallies, all negative but she told me to check back every year because they are always finding tests for new things. I wonder if that same genetic sample would someday find this abnormally that Keytruda would work for. How great that would be for anyone who's already had genetic testing done and of course all of us. The good thing is if you've already had the testing you don't have to fight the insurance co. to pay for it.
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Sadiesservant, so sorry for this rough patch for you, maybe things will improve soon. I had a really rough start in the beginning with Ibrance but the SE's are easier now and things appear stable. You and everyone here are in my prayers always.
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cive, I'm happy for your improvement and look forward to your next report. Good for you on the extra energy from XGeva....I get the opposite affect. However, when I read how much good it does, I just shut up and take a nap! About getting the scans.....a persistent nurse can be a great advocate for getting pre-approval on a PET scan. My nurse says she often has to go through several insurance people declining before she finally gets a Yes.
Faith, My daughter and I are both BRCA1 positive but my two sisters who have also had BC are not. At a FORCE conference years ago a genetics expert told us they may eventually have 60+ types of genetic cancer identified. I'm thankful you did not test positive and I pray you never do. I look forward to the day they will just enter info from our blood into a computer and it will arrange for the perfect cancer antidote. I feel sure that day is coming!
Sadieservant, I'm so sorry about your bad days. I've decided to assume that those are the days Ibrance is working its hardest inside me. I also have occasional chills and some nausea though stopping the giant calcium pills has caused that to diminish. Last week my calcium was its highest since I started the XGeva though and I've attributed that to the Tums I take for indigestion. Indigestion was common last time I was on an AI. Taking daily doses of Bragg's Vinegar w/ The Mother helps stop that if I can just remember to do it!
I pray that all of you have a good, relaxing week-end! It's good to know there are researchers passionately working in labs to find the next great thing for us. And I still believe Ibrance will be the magic bullet for many of us. I picture a future with "breast cancer cocktails" much like those developed for AIDS.
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First post
Hi everyone, not overjoyed to be posting here, but glad to find company. Breast cancer has metastasized to spine. I've not figured out yet how to post treatment history, but I'm on Ibrance and femara.
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Alicepot, sorry you are here also, but welcome. You will find a sudden friendship with many of the fine ladies and gents on this site. I am also on Ibrance and femara and doing well. Feel free to ask, rant, and rave here. No criticism ever--just support.
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alicepot, welcome to our little band of pioneers who hope and expect to see immunotherapy conquer metastatic breast cancer! After 3 cycles of Ibrance/Arimidex, the mets to my spine and many of my other widespread bone mets were remarkably diminished. When I had a second scan after 9 cycles, all but one place on my sacrum and one behind my sternum had no SUV on the PET/CT. The SUV for those two equalled what my oncologist said you'd expect to see from a stumped toe - a maximum of 2.3! This can happen for you too. I would recommend a book called Radical Remission where you can learn complementary therapies used by others who have had remarkable recoveries from cancer. I also hope your oncologist has prescribed one of the bone treatments. Mine is XGeva, a once-a-month shot. Some others here get Zometa. I also recommend natural yogurt to help you avoid mouth sores and Turmeric to help avoid joint discomfort. Our friend Z has a thread about exercise during treatment. All of us will be praying for you and waiting excitedly for your good results but we also know some days you're going to feel like this. Just roll with it; you shall overcome!
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PatG I like your reference to us "band of pioneers". I haven't thought of myself in that way before, but it does describe us. I've always been fascinated by books about pioneers on the American frontier......now, I am one.
About immunotherapy, there is not an FDA approved one for MBC yet, correct? Just wanted to clarify your statement because if they do have one for us I want to be on it, ASAP. My friend who has Metastatic ocular melanoma is getting ready to start on a clinical trial at MDA. Sure hope it works for her because MOM has no TX that is successful. Even Y 90 failed on her liver mets.
I just finished my sixth month of I/F and I go for monthly check up and labs on Tuesday. My labs have stayed stable on 125. I think she'll schedule my PET for early August but I am not going to start having scanxiety until August 1, Ha. That means no anxiety for the rest of July. Although ( on a completely unrelated subject), I am concerned for my son. He has to take his medical board exam on July 28. These types of tests are not on his list of favorite things to do. So, he is anxious. This test is for his Board Certification for his new job. There's a lot of pressure on him for this one. I'm planning on spending a lot of time on my knees praying for him as he prepares for this all-important test.
From fellow pioneer, Vicki.
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Alicepot, we're sorry that you have to be interested in this posting, but we're delighted to have you among us and ready to help and support!
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I have had total kidney stent failure once again 😓. Procedure was done Thursday and yesterday was so bad that DH connected me to a tube and a leg bag. Bag kept filling up with bloody urine so I would guess it failed quickly. The pain was unbearable! Still a lot of pain today but I think it's from the stent itself. Just want it the hell out! Talked to the interventional radiologist that was on call and he satthey are not staffed on the weekends to take care of it . Wtf!!!!! I thought that's why they are on call, not just to tell me to call back on Monday! I do not cry often but had several complete meltdowns yesterday. Stent failure means that after all the chemo infusions and four months on Ibrance that whatever is crushing my urerter is still there . This sucks
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Oh, Dianarose....beyond horrible!! And you have scans coming up this week, too. Too much stress!!!
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Joy- the scans are cancelled for this week . Need the inflammation from the kidney to get better first.
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Dianarose-
That surely makes sense. So sorry you're having to go through all of this.
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Diana~I have so many times said about how furious all this makes me. There is just no reason that good people have to suffer because of this awful disease. Words, or screaming or foul language isn't going to Change what we all are going through.but I just feel so helpless!! Enough already!!!! I just want to hear the words, that they have found a cure for this awful disease we drew the short straw for. I sure am praying my little heart out. That you get relief. That we all do!! Gentle hugs ~M~
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Dianarose......so sorry for your situations. Praying for you and the pain completely goes away.0
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DianaRose: I don't know what else to say, except, &$%#*!'f$0:,'!!!!!!!!!!! You don't deserve this. No one does. I am so sorry to hear about the continued bad news. I wish that there was something that we could do to siphon off your pain - the physical and the emotional pain. Alas, all we can do is send our support, our prayers, and virtual hugs. My too-simplistic prayer for you is, May the good Lord strengthen you and heal you, and may he strengthen your caregivers as well.
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Dianarose, this is terrible news! Cancer stinks, this is not fair! I am sending thoughts, prayers and hugs your way! Please let us know what happens with Dr tomorrow.
I have been away for a couple of weeks with no WiFi access. Camped with kids and grandkids on lake in NC. It was wonderful, well except for the stomach virus I picked up,yuck.
My Ibrance and bloodwork is so offschedule, I don't know what is going on. Scans on the2414th and of course I am starting anxiety. Last scans showed progression in right hip, which we radiated in April. Hoping it worked! Was having no symptoms, now it really is bothering me. I have not seen a Dr who knows me in forever. Last I heard was my MO out and my PN is on an emergency medical leave. Oh well, will roll with the punches, as usual.
Hugs and prayers everyone
C
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Dianarose, I'm praying that everything gets handled tomorrow and that you get complete relief. God bless you, friend.
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Dianarose, I am so sorry to hear of the recent issues you have had. Like you, I don't understand why people in IR are on call if they do not perform procedures on the weekend. It is obvious you are in a great deal of pain and need to have them available regardless of the day. I hope you get the help and treatment you need tomorrow and that the kidney inflammation subsides quickly. I also hope that you can have scans soon so you find out if the current treatment is working. You remain in my prayers.
Hugs from, Lynne
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Dianarose, there just are no words that express how sorry I am for all that you are and have gone through. My prayers are storming the heavens for you and all of us here. I've always prayed for those with this dread disease but I don't know why I haven't been praying for a cure. That changed a few weeks ago and it's on my daily list now. It has to happen sometime! May God Bless You
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Dianarose, I'm so incredibly sorry you are going through this. There are so many options for pain control and many times doctors are not aggressive enough. Push push for better pain control! Praying for relief for you soon
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Dianarose. Today is Monday, so I hope that means that a Dr is relieving your pain, taking the stent out, whatever it takes to make you better.
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Been waiting for 3 1/2 hours for them to call with a time to come in. I called back once and the woman got nasty on the phone. I believe in karma so she will get hers
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I started on 125 mg. of Ibrance, but as I said in my first post, at the same time as 10 days of radiation to my various bone mets so week in the hospital may have been reaction to radiation and not 125 mg. of Ibrance.My oncologist and I were divided on this. But my oncologist took me down to 75 mg. which I'm finishing my 3rd cycle of next week. Even though my WBC has been low it hasn't been low enough to not take the Ibrance. I am having blood draws once a month during my long visit to oncologist which ends with shot of denosumab.
I am often fatigued and take a long afternoon nap. Take my multi-vitamin and big calcium supplements in the afternoon and sometimes feel a little queasiness afterwards. Never thought it could be the calcium.
I have lost about 1/2 of my hair since starting Ibrance in January Not into a wig yet as I had a lot of hair. But have one in the closet just in case.
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Hi Topaz122. I have been doing pretty well on 125mg Ibrance however hair loss is the big problem. I too was lucky enough to have thick hair which I wear long and have highlighted every 4 weeks but since cycle 5 (now on cycle 10) my hair is falling out in handfuls. I have requested to start on 100mg next cycle and my Onc thinks this is the dose that suits most people however from what you say it doesn't stop the hair loss. I guess as I am lucky enough to be on this plus Letrozole & Denosumab and getting ok results and living the same life as I lived before dx, except I now spend 2 days a month having to visit the hospital as I am on a trial plus scans every 3 months, & very few s/e's I should just be grateful but.....
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Procedure is done! Still quite out of it. Gave me more drugs this time. Not feeling any pain
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yay to more drugs! You need to rest and gain your strength back. I don't want you to get a cold or anything since DH isn't feeling good. Wash those hands! I have had you on my mind all afternoon! Bless you my friend ~M~
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