Ibrance (Palbociclib)
Comments
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Leapfrog, I get a band of headaches the last week of my cycle, and I am stable. And yes, stress usually brings it on. I find I cannot handle stress well anymore.
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IntoLight...thanks very much. You've reassured me no end. I'm the same. I never used to be a worrier or get stressed out yet now I do. I don't like it.
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Hi Georgia,
First of all, what gorgeous photos, looks like a lovely Easter service! My liver spots were discovered when I had my regular scan. I'm waiting to be scheduled for a needle biopsy, which I hope will be this week, then once we have the results, I'll see what my options are. My blood work is fine and my liver is not enlarged, so I'm hopeful that we can get this under control. Best of luck on Ibrance. I started out on 125 mg, but after the 2nd cycle moved to 100mg and stayed on that for the duration. Hang in there and all the best!
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Kattysmith, best of luck with the new treatment! Stay with us and let us know what you do and how you're doing!
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Thanks, I will!
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Please know my article I posted for leapfrog is for anyone to read..My mouth sore gone..propably from sucking on hard candies. ha! No discomfort from yesterday's breast biopsy..Today will write in BC journal and woodburn magnets of our lake.I cut them out on a bandsaw all one piece about 4" long including fish or loon at end..looks like a mini breadboard. Can't wait for it to be warmer as bandsaw is in unheated garage.Today..25 degrees, with wind a 'feels like' temp of 13..Using my bandsaw is a gift.. as you see in article had to give that up for 3 yrs..Good Morning !!
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Georgia- the pictures are absolutely beautiful!
50s girl- I always love your posts. You are an inspiration and incredibly wise.
I am wondering if anyone has had high alkaline phosphatase in their blood work? Mine has been high last two rounds and in reading Dr. Google, it could be an indicator of Mets spreading to liver and/or bones. I have a call into MO. Just wondering if anyone has had this without it meaning progression?
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MountainLady, we lived in Albuquerque for ten years and made many trip to Tijeras. Beautiful place.
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Well, my great run on Ibrance is definitely over. I went 31 months before the scan in January 2018 showed a lung nodule, and if you count the 3 months since then while we waited to re-scan I've had 34 very tolerable months on Ibrance/letrozole. It was my first line treatment (along with periodic Zometa) for my de novo stage 4 pleomorphic Luminal B lobular breast cancer. It was very effective for those 2 1/2 years and very tolerable. I hope that you all have such an easy time and get years of good response!
I had a CT scan on Thursday to follow up on that small nodule that appeared in my left lung on my January CT scan....Unfortunately that 9x6x6 mm left lung nodule more than doubled in size (volume) to 11x10x7 mm over the past 3 months AND a new 5x5x7 mm nodule has appeared in my right lung. The radiologist describes them as "unusually shaped for metastatic disease" (the left one is triangular/wedge-shaped and the right is "amorphous") but he also goes on to say that given my very extensive osseous mets and the rapid growth of these 2 nodules there is a high suspicion for metastases. I exchanged a few emails with my onc and she also says she thinks that it's not unusual for lobular masses to be less smooth-edged and symmetrical than the more common ductal masses she sees on CT and MRI, and her sense is also that it is definite progression. I see her on Wednesday and we will figure out my new treatment regimen.
I have been keeping a list of meds in development/trials that are recruiting or about to recruit; I also have a copy of the article about the upcoming ROLO trial in London investigating the efficacy of the already-approved for lung cancer drug crizotinib for lobular breast cancers that I am going to email to her on Monday along with a short but pointed list of questions so she can be better prepared for our appointment on Wednesday.
See the following if you haven't read the news yet about the effects crizotinib, an already-approved drug for lung cancer, has shown against lobular BC: http://breastcancernow.org/breast-cancer-research/our-research-projects/rol o-trial-for-advanced-lobular-breast-cancer I've tried to contact Pfizer by email and voicemail to see if they have a similar trial in the works for the US in the near future--I'd like to know so that my onc and I can figure out how to use that information when we figure out my next treatment. I will ask my onc who is a PI for a number of trials, if she has a way of finding out if I don't hear back from Pfizer.
I am getting past the shock phase, and am definitely sad, worried and a bit down today. Most of my fears and sadness focus on what this means for my 14 year old daughter. She's already had to deal with the death of one parent 5 years ago, and now the chance of my dying before she is well into adulthood is even more likely. I have a stratified list of wishes for us-- that I am alive another 3 1/2 years to see her graduate from high school, and also not have to move across town to live with her guardian family; 4 1/2 more years and I will see her through her first year of college so that we both are confident she really is steady on her own; 7 1/2 more years and I can see her graduate from college and take the next step into whatever her "grown-up" life will be....So sad that I've not ever allowed myself to have the even more wild hope that I can be alive long enough to see her into her career and adulthood.
However, this really wasn't unexpected-- I was at month 31 on Ibrance/letrozole in January when I got that scan first showing the nodule in my lung. It was a tolerable and successful two and a half year run, and I'm very grateful for that. Considering that current post-marketing analysis of Ibrance's efficacy shows a 24-26 month median response time, I'm happy to have been on the long end of that; although if I am honest I will admit that I was hoping for more time from it. But on to the next step.
Obviously with the second lesion appearing in the interim I have to move on to a different medication. In January we talked about radiating that lesion if it grew but remained the solitary new thing...with this other one appearing, and both f them growing so quickly, I'm worried that there are other too-small-to-be-detected on the CT lesions already growing and I want to shut them all down as soon as I can (If I can...) That's always the real worry-- not that there will be progression, but worry about if there be another effective treatment to deal with the more crafty cancer cells that drove the new metastasis. It's such a guessing game. Science needs to move ever faster so that there can be some answers to help make this less of a crap shoot.
I'll let you know what we decide after my appointment on Wednesday. I will spend this wet, blustery, stormy weekend revising my list of clinical trials to ask her about and getting the rest of my questions together...At least I'm not giving up time in the garden to do it!
Blessings to you all. May we all find the strength to carry on with courage and grace.
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Elizabeth, I am so sorry to hear about your progression. I will pray that your onc team will help you find the next beneficial treatment, and that you will have many more years to spend with your daughter. Please check in with us and let us know how you are doing.
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Mica, I am sorry to hear about the progression you are dealing with. You seem to have done a lot of thinking about this, and you are ready to move ahead and hit those buggers hard. I admire your strength and your attitude. It is wonderful that you were able to stay on Femera and Ibrance for so long. I hope you will have as much success with whatever your next line of treatment is. Maybe your cancer is lazy and dumb and therefore will continue to respond to treatments for a long time to come. You have done your research. There are many options out there, and it sounds like you and your MO are well-equipped on determine the best strategy for your treatment. I hope to read posts from you someday about all those special events you are looking forward to sharing with your daughter. Please stay in touch with us here on the Ibrance thread. Your experiences and results will continue to give us hope.
Hugs and prayers from, Lynne
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Mica1 -- I'm new to this post, but sad to read your post about your progression. I, too, have lobular breast cancer, which my onc calls "sneaky" because it often is not easily seen by traditional scans and doesn't present with solid edges. My lobular cancer spread to my ovaries 2 years after original diagnosis. After that treatment, I was in remission for 6 1/2 years and it has come back on the peritoneum (lining of the organ cavity). I have a daughter who is 16. I feel for you and send you light. I hope that they are able to stop this mets as well and give you many more years.
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Good afternoon
I started my 10th cycle of Ibrance today. I read a novel this morning my answer to I feel so tired and I’m not going to do anything for awhile.
Yesterday was a kitchen disaster. I was rushing cooking and poured water into a hot baking dish that was still on a rack in the oven. Everyone knows what happened next and I closed the oven and went out for lunch with a friend. Of course I had to return and clean up that awful mess. The oven is old and I had thoughts of just. Buying another but my husband came in and started helping hours later.....
Lakewoman I read the gun oil story very funny and cute. Something many can relate to. I read it to my husband and we shared some good laughs. Thanks into the light for sharing. Thanks for making it a url so I could just click on i
Georgia B The pictures are beautiful, breathtakingly so and your description makes them an even more powerful image.
Katty I’m sorry you have to try a new medication. Anything new in MBC has some trailblazers I’m sure you’ll find them and settle in. Stay in touch please and thank you for your time here.
Leapfrog happy you’re writing away. It gives us all another perspective.
50s girl I’m glad you made it home safely. It’s always good to be home.
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Hugs and best love to you, Elizabeth. Let us know your next steps and stay in touch! xoxo
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Mica- You did get a long go on Ibrance, and try not to freak out about the future. I'm glad you already heard the recent headlines about crizotonib (ALK kinase inhibitor). Another drug called alectinib apparently works even better on lung cancers, so you might want to ask MO if that would also be a good drug for lobular cancers:
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Mica- Oops!! I take that back- interesting! The reason Crizotinib works so well on lobular cancers is that most of them have a defect in the E-cadherin gene. In a screen of drugs to ask what would make these cells die, it was determined that ROS inhibitors are the best, and Crozotinib does that. But Alectinib does not inhibit ROS1 at all, so you definitely don't want that one.
There are some other ROS1 inhibitors in the pipeline but I don't think any as far along as Crozotinib- here is a link:
https://ros1cancer.com/treatments-and-clinical-tri...
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Also this discovery was made by the same research team that figured out that PARP1 inhibitor drugs mostly work on BRCA1,2 mutant cancers, so a good team with a great track record made this finding.
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And lastly, perhaps you can get the drug via the MATCH trial, which pairs a genetic deficiency in cancer with a given drug, rather than based on cancer type or origin?
https://www.cancer.gov/about-cancer/treatment/clin...
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Mica I am sorry to hear of your progression. It has to be so difficult to deal with needing to change treatment. I'm in my 8th cycle of Ibrance/Faslodex, hoping for a long run but you never know.
I also have lobular with the e-Cadherin mutation and am interested in what you find out about crizotinib from your onc. I read about that trial on another site and it sounds promising.
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Mica ..this is for you while you are going through waiting til Wed and change in medication...And of course for anyone needing a boost!!! but it will take me awhile to get there!!!! lol!! As I told leapfrog I enjoy writing and haven't even been on 'meds for mets' for a week yet..Yeh good title for my next article!!...I had mentioned to my onc a few weeks ago about being in the Nurses Health Study since the 70's and explained that after I die my family will ask her for my records to be sent to Harvard Medical Center in Boston..And she said You're not thinking of dying are you ??? I blurted out "NO I have an article to write in ten yrs"..and gave her a brief explanation .The look on her face, when I told her why convinced me, she knew I had hope!!! And today I share hope for Mica and all of us!!
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Dorimak - i have been on Ibrance for almost 3 years (in June) for a single supraclavicular node in my neck. I also had the node removed and had radiation to the area. So far, so good. Fingers crossed and prayers for you.
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Mica/Elizabeth, your words of courage and grace mean much to me an no doubt others. You write with those same sentiments. Your ability to study and research yourself is impressive and I hope your MO appreciates this too~~I suspect she does. It is a grey day here on the west coast and a garden helper cancelled today due to the earlier rain. I am virtually one handed at the moment but love it that I can pay someone to work with me in the garden.
Love to you in Portland.
Marian
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Elizabeth...sorry about your progression. You have done your homework and together with your Onc I know you will decide on the best treatment.0
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I have a lung met...how do you find a discussion on just lung mets? Wish I was as smart as you gals. I learn so much. Did look in the topic section but did not see anything. Thanks for any info.0
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Airlinegal, there is a thread called mets to lung in the Stage IV forum (not clever enough to post link, sorry), but it's not very active.
Mica, you are handling your news with such grace and strength of purpose, I'm sure those skills will serve you well for years to come. Keep us posted on your new regimen so we can learn what's up ahead.
Time-for-a-cure, wow, congrats on a solid and continued run on Ibrance.
Wishing you all a touch of Spring this coming week.
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Hello ladies, I was reading back at the beginning of this page to the discussion of vaginal dryness and having some "uhuh" moments - yeah, like Jaylea said, its use it or lose it. Penetration is excruciating, even just with one finger (sorry to be so direct) It's pretty ironic since looking back on my life, I always craved sex. Actually it is kind of nice to be rid of that tyranny.
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Hello everyone, I am finally back from my skiing vacation. I managed to go skiing all 7 days, although my endurance is by far not what it used to be. On the other hand, I could already see an improvement within these few days, therefore I am determined to do more exercise here at home again.
Meanwhile, I started my 8th cycle of I/F after having my bloodworks done by a lovely Austrian doc, who appeared to be responsible for everything from birth and childhood until high age in his small community in the alps. I hope that it will continue to be as successful as it was (strong decrease if primary tumor size, finally decrease of CA15-3 by 25%).
I am not able to keep up with the last few days of this thread, so apologies for not replying where it would be appropriate.
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amarantha, it was me talking about vaginal dryness. At first, I thought it was "nice to be rid of that tyranny." My tyranny was coming from DH in the form of his desire and my inability to satisfy it. Tyranny is too harsh a word. Disappointment is more like it. Now, I am thinking more about myself. I'm better at that now. Do I want to go the rest of my life never having sex again? I don't really know. Seems like a rash decision. I'm working toward being able to decide and be proactive if I decide to try it. I still have so many questions and no answers. People here are the most supportive and knowledgeable. Doctors don't offer much help. We do all the alternative activities but ...
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net ager
Skiing is awesome you must be so proud of yourself!
I also had significant decrease in tumor lesions from 20 to 5 with radiation and ibrance and now to 3.3 after 9th cycle. Started cycle 10 this weekend.
Radiation doctor suggested a baseline mammogram since I have had once since stage IV diagnosis a year ago. Any info on this ladies?
Tanya
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I have a question for you all and need some help...
My GP took me off of omeprazole (I was on it over a year--yes, too long!) but it worked wonderfully. Now I have had major struggles since and other otc meds have not touched my GERD. I even feel like I suddenly have a hiatal hernia with slight difficulty swallowing, pain, GERD, etc. Anyone of you have a better solution? I will contact my GP as soon as I can document everything as I have adjusted my diet, etc. and want to rule out the simple fixes.
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