Ibrance (Palbociclib)
Comments
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Welcome to all the newbies here! I hope Ibrance is easy on you and that it works for a very long time! There is so much excitement about Ibrance and time will tell if some of us can get a few extra years taking it. I have felt lucky to be one of the first to get it after FDA approval.
That said, it looks like I've got another "significant progression" in the works. I had 3 MRIs and they all say "significant progression" since my last scan 6 months ago. This will probably mean I need more scans to see where else it might be hiding. MRIs are very specific and mine were one of L and T spine and Pelvis. My low blood counts are probably due to "complete replacement of normal bone marrow" in many places. That will make it hard to choose a treatment because my marrow is being effected so heavily. Anyway, looks like my increasing tumor markers were right on.
Ok, going to find something to distract me a bit. Decisions need to be made soon, but not today.
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Anybody taking Faslodex and Ibrance?
Lots of scans scheduled for re-staging mets in spine, lumbar and ribs. Found a nodule on my thyroid which will be checked out as well. Having lots of pain in my upper ribs, but can't have more radiation.. I've already had IMRT and SBRT and can't do it a third time. Feeling anxious about that....thanks for "listening" ladies...it helps. You are all an inspiration to me.
Hope, when do you get your results?
Linda
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Hope, I don't know what to say or how to comfort you. My heart wanted so much for your scans to show NO progression. I can only pray that the next tx will do the trick. 💗💗💗Myra.
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Hope
We must have posted at the same time. I'm so sorry to hear about your progression. You are in my thoughts and heart.
Linda
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Hope and Linda
I'm so sorry to hear of your progression. There are no words other than we're all routing for you!!!
Babs
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Hope- that really really sucks. I wish MO's would listen to patients because we know (pain, N/V, feeling sucky longbefore the scans show.). I am so very sad that Ibrance didn't work better. I am worried because I also have ILC. I have read and listened to this site since you started it.. hopeful.
I also just got major progression into my omentum and peritoneum, more in the bones, new crap in the R lung and liver. I had 4 liters of fluid drained off last Wednesday and will go in tomorrow for more to be drained. Malignant ascites has a poor prognosis 2-5.9 months. My MO said he was trying to get approval for something and I don't see him until Wednesday. I have asked repeatedly to try Ibrance and have been shot down every month. I am afraid it is too late now with the wide spread jump out of my bones and into my gut. I have no clue if Ibrance will even work given the wildfire going on. If I am allowed to try it I will. It is pretty depressing to not even be allowed to try something given the circumstances.
I hope the drug works for everyone else. Prayers for us all.
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Hope, very sorry to hear of your progression. Hopefully your onc will have a new plan. Decisions are hard, no easy answers. Just know that we are thinking of you during this difficult time.
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Hope,
Not the news we all wanted to hear. I am devastated for you.
*susan*
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Hope, I'm so sorry that you didn't get the news we all wanted for you. You are in my thoughts. I hope you find something very distracting until your dr has another plan for you.
Rosevalley I'm sorry to hear of your progression too and hopeful that what you try next works well. It will be interesting to see i f Ibrance is allowed.
Linda, I'm on Ibrance 75 mg with Faslodex. The low dose is due to my poor tolerance of afinitor.
Pearlady, yes, my Ibrance is paired with Faslodex because first line treatment was with Femara.
Hugs and encouragement to all of us.
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Hi All : I'm hoping that these are just minor set backs for you all. My scan on the 25th showed my spine, pelvis are just riddled with legions. I have ILC in my supposedly would have been my good breast. I wished I hadn't listened to my Oncologist when I wanted a mastectomy and pressed him to get it done ! Maybe it would have helped or maybe not. It's too late now, it's already in my bones.I hope those with progression will get something that works soon !0 -
Since I am premenopausal, the Zoladex is to shut my ovaries down and put me into menopause.
Monika
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Lindalou and Rosevalley, I am so sorry for your progressions as well. Hopefully you will find health and a tx that works! Myra.
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I'm so sorry for your progression, Hope. And Rosevalley too. I've been following this thread from the start, as Ibrance was supposed to be next for me. Ibrance and what, I have no idea, but it was temporarily shelved because of progression. So I'm on chemo but the goal is to get back to the anti-hormonals. This thread is very informative, thank you all.
And I must echo what Rosevalley said about MO's listening to us. I was in pain for over a year (ribs/spine) but nothing was showing on scans. Specifically, CT scans. But I had a bone scan and MRI last year too after complaining, complaining, complaining to my MO and they were clean. But the pain was horrible and I just KNEW something was up. Sure enough, a year later mets to spine and ribs appeared on a second MRI. If you're in pain, listen to your body and insist on those scan(s)!
Wishing you all well, and I hope to join you all on Ibrance soon.
Rose.
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Hope, I was really praying the pain was a good thing in your case. I am so sad that was not the case. I hope you can find the right treatment to slow this shit down. I want you to be ok.
This thread has been busy. I'm a little concerned about all of the progression. I mean, wasn't this supposed to be THE drug? I'm a little anxious now.
Monika. I was also misdiagnosed... For a year and a half they let my cancer grow, saying it was nothing, until it was stage 4. I wish I knew then what I know now... Oh well too late for me. I am one of the rare women who actually sued the doctors for delayed diagnosis......and won. (Although ultimately I don't consider this being a winner).
Monika, are you not having any other chemo? Only the Ibrance combo? This is interesting.
Intothewoods, you are the first I've know on the Ibrance Faslidex combo. I hope it works well for you.
Stefanie
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Hope, you have amazed and inspired me with your strength and sense of humor through all your pain and suffering. You've helped me and so many other people with this thread, and I'm praying that now the doctors can now pull out something else from their bag of tricks that will help you.
Lindalou and Rosevalley, praying for you, and for all those suffering pain and progression, and difficult treatment decisions.
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Hope I am so sad about your progession. Certainly not what we wanted to hear. Have been praying so hard for you. Now praying that your Drs. find the right treatment for you. I know first hand how disappointing it is to fail on a drug.
Linda praying for you also. Very disappointing and disturbing.
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Hope, I just read your post that you've had progression. I have been dreading to hear this, worried that was the reason for all the pain you have been having. May your next treatment just clobber this stupid cancer.
Maybe they can check Her2 status again? Woodylb on the liver mets topic tested negative twice with FISH, but positive with CISH, which opened up new treatments for her.
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Hope, Lindalou, and Rosevalley, I am so very sorry to hear about the progressions. I've been praying and will continue to do so. But, jeez, stupid cancer! I wish each of you better success with the next treatments. There are so many stories out there of women who were in really bad shape and the next treatment was the one that kicked it back and I pray that's the case for you
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Yes, Lindalou and Rosevalley, too, I'm sorry to hear reports of progression. May your next treatments work amazingly well!
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Finished my first cycle of Ibrance last night, now 7 days off. Is there any way to tell if counts are down, do you have any symptoms? I have a doctor appt next Tuesday but was just wondering if there is a way to tell.
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capinva, we all have different symptoms. Some have great fatigue, some have lightheaded symptoms and some of us really have nothing. You will get to know your own body. Myra
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Capinva, I just have some fatigue the last week of the cycle. Feel better on my off week and counts go right back up. Not really having any other side effects,
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Hope I know that we discussed the possibility of Her2nu. I think it's definitely worth to push again for all of the testing that you can possibly get. You may have to get both FISH and CISH, as Her2nu is difficult to detect with bone mets. That would open up so many options for you. WIth herceptin and Aromatase inhibitors I had almost 6 years NED. There are also other newer options for Her2nu.
Praying for you.
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Thank you everyone and yes, pushing for more tumor testing is high on my list. I haven't responded favorably to hormonal therapy and that makes me suspect there is something more to this. I've had FISH done 2x, but the last was a bone biopsy and wasn't a sufficient specimen for the test. I have this enlarged node in my neck, but I know needle biopsies aren't the best for this type of testing either. Will have to see what else comes up in scans to see where I can get a good biopsy.
Rosevalley, sorry to hear what you are going through. I hope you get an opportunity to try Ibrance. We have seen positive outcomes right here on this thread. Hoping you are one of them.
Lindalou, hang in there. Make sure you address the pain and don't let it get out of control.
To everyone in Ibranceland, please don't let my outcome lessen your hope for this drug. There are many here having very positive results and why wouldn't you be one of them? Going down this stage IV path is difficult, to say the least. Having hope or faith that there is something that will give us a reprieve from the physical and emotional pain is the most important thing we have. So don't let anyone call you a fool for hoping, or having faith that maybe, just maybe, everything will be alright. My hope has been shaken a bit, but I know how important it is to hold on to hope!
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Hope,
I looked at your signature and noticed there are several chemo regimens you have not tried! I am starting on Ixempra today. Not looking forward to se's, but planning on sticking to it as much as I can. I have not had chemo for 4 weeks and I can feel that the cancer has taken advantage of that. I also have an enlarged lymph node on my neck. Let us know what your next tx plan is. We are pulling for you!
Hugs,
Brenda
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Thanks Brenda. You are right on the chemo. I have been very concerned with quality of life, and with ILC, it doesn't tend to respond as well to chemo. it is probably in my near future IF my blood counts will cooperate. My WBC hasn't been above 1.8 since last year, too much marrow effected. I should know more in the next few weeks.
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Hope
Thank you so much for your words of encouragement. I'm feeling a bit down. After all the fighting to get the Ibrance then fighting to get the co pay to be affordable now I'm thinking it's not doing what we had hoped. Having my blood cancer markers going up each month,and 2 new spots of activity that aren't definitive at this point is very discouraging. But what you wrote gives me hope that maybe when I have my next set of scans in 3 more months I'll have better news!!!!!Thank you so much!!!!! I needed a pep talk!
Babs
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Hope, That was such an inspiring note that you sent to "everyone in Ibranceland". Thank you. you are a such a goodhearted woman! There are still more meds to try until you get the right combination so you are right not get discouraged. We are all pulling for you, as well as Babs, Lindalou, Rosevalley and anyone else out there needing support!
On a lighter note, I stood up too fast today and fainted! I saw a little bird right up on the window ledge outside and I went to open the sheer curtain. Fortunately, I fell onto a futon we have under the window. I only bruised my forearm. It was weird. You know how everything blacks out when you get light headed? Well, it felt like the blackness lasted forever or in slow-mo then nothing. Came to with a huge headache that has not gone away. Drinking lots of water.
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Thank you Hope for those words of encouragement.
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Hope, I echo Vivian's comments. She said so much, and so much better than I could.
Vivian, that isn't on the light side- that is the light-headed side! How scary that is.... I hope that you were just a little dehydrated and that this is not a sign of something more serious.
Still tracking my boring side effects. Even on my week off it is a moving target. Will see if I follow the same pattern during cycle 2.
*susan*
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