Ibrance (Palbociclib)
Comments
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Oh, Grannax...fingers crossed for you for a quick solution to this situation!
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I just came from a sewing circle where a woman told me that women whose cancer has spread to their bones should accept that they are dying and refuse treatment. I told her that she had just said that my life wasn't worth living as I have cancer in my bones and liver. She repeated that I should not accept treatment as it's a waste ofmoney. I live in Canada where health care is largely funded by the government and she feels that I am wasting public resources
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Claudia, so sorry the meds to counter the other meds are causing you such grief. I hope you can tolerate the 3rd shot, or at a minimum the 2 will get the job done.
Grannax, may you get a restful nights sleep to give you strength for what tomorrow presents.
Hope, doing the Snoopy happy dance for your good news!
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Hobbes, Holy cow, that is terrible! None of us should be subjected to anyone like that woman. I have (or had) a friend who told me that if she is ever diagnosed with cancer, she will have no treatment. She had watched her husband pass away from lung cancer, and she didn't understand that my situation is very different from his. She could not handle seeing me knowing that I have MBC. As you know, many people with bones mets can pretty live normal lives for many years. Anyone who says that resources are being wasted on us is ill-informed and ignorant. Doesn't she know that everyone on earth is dying? We just know the probable cause of our deaths although not the timing. Most of us continue to live productive lives, and we contribute to the world, not greedily steal resources from it. We continue to work, to raise families, to volunteer for causes we believe in, to love, to spread kindness, to run marathons, to publish books, to create objects of art, to win baking contests, to dance, to sing, to garden, to ski, to take beautiful photographs, to help raise grandchildren, and on and on and on.
Every minute of life is precious and worth living. Every one of us is important and deserves to receive treatment.
Big hugs to you from Lynne
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Great news Hope!
Grannaxsending healing thoughts for the antibiotics to work quickly.
Claudia I'm hoping your counts go up and you don't need more shots.
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Hobbes12- there are myriad ethical and moral issues in life and medicine. When she gets her bone mets she may feel differently. Also - who decides who is "worth more". Should alcoholics get liver transplants? I have an MD friend who works in this field and people get so confused about moral and ethical issues. Hospitals have committees that help make these very difficult at times decisions. I don't think bone and liver mets from breast cancer is in any controversial group as to whether it is worth treating-she is behind in her knowledge by many years. My MO thinks that MBC is becoming a chronic controllable disease. I don't know how Canada is dealing with this question. I hope you enlighten her and the whole sewing group. You are valuable!
Does she further opine that not everyone "deserves" a public education etc- etc etc
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PatGMc thanks so much for the positive visualisation you suggested. I was in the habit of doing that but let it slip lately. Thanks for the reminder and the encouragement. Hug.....
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Nonahope, that is good news. It takes time, and it sounds like your tumors are taking a hit!
Hobbes12, I am so sorry you had to listen to this. I wonder what she would say were she the one with the diagnosis. Do not listen to her. Every life is special and is worthy of living to its very fullest. I would much rather my money goes for medicine than war. For me it is about priorities, and you are most important. We had a discussion about this just a few days ago so read back a bit. Search for my name and you can read my mother in-law's story. We love you just because you are.
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Hobbes12 that woman's comment is the most ridiculous assertion I've seen or heard and she is SO wrong on every level. I have bone mets and no one had better make that comment to me. I'm normally a very mild mannered person but I'd be putting that woman straight and mentioning to her that people like us have more to offer than the average person does. We've all been through really tough times and we know that maybe more tough times are ahead of us but we choose to live in the light, not the darkness that envelopes souls like hers.
I've always been a positive person and, since I've picked up a bit physically, I've made it my mission in life to spread positivity and to teach people to find joy in the simple, every day things in life. I believe that most in our position are given this "gift", along with our illness....we learn grace and positivity because we know that every day, every moment and every person is precious and we know it.
I'm so sorry that you were subjected to such unkindness and ignorance. Please know how valuable you are to this universe and to all of us and put aside that poor, sad woman's miserable view of life.
Sending a great big hug
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Hobbes, my first instinct was to say this is why they don't allow hand guns at sewing circles but that seems insensitive in light of recent events. I'm so completely appalled that anyone could be as cold as the woman you met. It's bad enough if she said it not being aware of your situation but to know and to keep on with that narrative tells me she lacks basic human decency. I don't like to wish bad things on anyone but I might hope just a little bit that she is in our shoes someday. I wish she knew my friend who, after her diagnosis with bone mets, adopted a baby girl born in a Texas prison and has raised her for 16 years (so far). What a shame it would be if L hadn't received treatment! How did you ever keep your cool enough to sew after those comments?
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Hobbes12. I would have stuck a pin in that woman from your sewing circle. I'm glad you spoke up for yourself. What a horrible thing for her to say.
I am almost done with this month's Ibrance cycle. I switched down to 75 mgs midcycle and am glad I did. I am also halfway through radiation for skull mets and developed a sinus infection. Despite all that I am less tired than past cycles. I think the lower dose ibrance helps.
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Toasting the good scans. Nice work Hope. Kick back and relax as your treatment is working.
>Z<
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Hobbes, the others here are much nicer than me. That woman is just a judgmental bitch. Excuse my language. May cancer never affect anyone she loves dearly. Pat you made me laugh - we know you are an incredibly sensitive and kind soul....and I love what you said lol.
Great news, Hope! Very happy for you. Toast away.
Grannax wow I hope this responds to the treatments. And I hope you're not in a lot of discomfort from it.
Hugs to all of us living life with MBC!
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Hope. Good news. So glad for you. Thanks Pat for the new motto." If it doesn't grow..." Grannax I hope you get the right antibiotic. Sending good wishes to all
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Good morning...
Many thanks for all the kind and best wishes for me. Now, can I ask for some more positive vibes?? My oncologist called me around dinner time to ask me to come back to the facility today for some more blood work. Apparently, my CMP showed that I am anemic. I have been on the anemic side since chemo from my initial diagnosis of BC in 2010....hopefully, I will just need a B-12 injection. I take a B-12 supplement but was told that often times as you age it's not easily absorbed. Hopefully, this is a minor issue.
Claudia...so sorry you have to go through those injections and feel so bad. Hugs that things get better quickly.
PatG...Thanks for that article. I was a bit confused, but I take it "flares" are a good thing in my case?
Grannax....Oh No!! I can imagine how you feel. I remember being ill several years ago and I was given 3 meds to take. When I woke up the next morning, I looked in the mirror and my face looked like a basketball....I was allergic to one of the meds. I could have been a cast member on American Horror Story.
Hobbes...What an insensitive individual. I am in agreement with all the other responses. Plus, I would find a new sewing circle!
Well, off for now...will be back after my appointment.
Have a great day!
Hope
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I took 24mg of prednisone yesterday and 1000mg of Cephalexiin ,I think the rash and swelling is a little better. At least its not worse. So I'm feeling optimistic that I'm on the right course of treatment.
Does anyone know, if counts are really low, would I still run a high fever from a bad infection? It seems like fever is our immune response to infection therefore, since I am immunocompromized, it seems like my immune system would not be able to fight infection and I wouldn't have high fever.
I'll have labs today. Who knows, if my white counts are higher that might mean my body is trying to fight this bacteria. Last month was the first time I came very close to being too low. My ANC was 1.4.
Thanks everyone for your well wishes. Maybe tomorrow I will wake up to a normal face.😃
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DITTO........to what everyone said....you could find a new sewing group....I would stay and prove her wrong. I am sure the other ladies were appalled by her comment. It takes all kinds to make up the world. Keep your chin up.0
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Hi all, Hobbes I just can't believe someone would say something like that to you! Where is her compassion. All you can do is pity someone like that.
I got my 3rd Neupogen shot this morning. I can't believe it. Yesterday I got a hold of a nurse and she gave me some pointers on what to do. On regular schedule with tramadol. You know you have to just laugh at some of this stuff. Go on tramadol, blood pressure shoots up, have to take more bp meds. Went from diarrhea to constipation overnight. Pain is tolerable today, I even managed to get a couple of short walks in. But now, Dh wants to push vacation back a week to give me time to get stronger, I say no way. I have been waiting 10years to make this trip.
Hope, everything sounds good except the anemia, but I to have been anemic for the last 2years.
Grannnax, you must be able to still have fever, otherwise, why would they tell us to call immediately if you have fever of 100.4, I got another lecture on that yesterday because I had chills all day, no fever though. I hope you start feeling better soon.
Leapfrog, thank you for that! Your post really resonated with me. I completely agree that there is not enough awareness of this disease.
Toasting everyone! Have a great, pain free weekend!
Hugs and prayers, Claudia
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How many of you got immediate results from Palbo?
How many found there was a second wave of action 6-12 months afterwards? I'm curious, as my wife experienced a slight rise in tumor markers following the switch to palbo, then at the end of the 2nd and 3rd cycles, a drop to slightly below and one slightly above her previous lowest tumor markers on her previous treatment (xeloda).
I wonder if the letrozole produces the initial results, and the palbo, for some, some secondary action, later?
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Husband11,
These are my CA 27-29 values. The first was a year after initial dx. The second is when I started palbo. I'm not sure I see a pattern but maybe you do.
Date Value Change 11-24-15 18.3 3-14-16 32.5 14.2 Start palbo (stage IV dx) 6-6-16 35.3 2.8 7-11-16 28.7 -6.6 8/1/16 29.5 0.8 9/12/16 26.8 -2.7 10/10/16 27.7 0.9 11/10/16 22.6 -5.1 12/8/16 21.5 -1.1 1/5/17 24.8 3.3 2/1/17 32.2 7.4 3/29/17 33.8 1.6 4/26/17 26.6 -7.2 5/24/17 27.2 0.6 9/14/17 25.1 -2.1 0 -
I tried to post my CA 27-29 spreadsheet and it looked all nice in the text window but turned to crap when I did preview. Anyone know how to fix this?
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Husband, I just completed my 8th course of Ibrance/Faslodex. At my first scans (3 months: CT of chest and thorax and a nuclear bone scan) they found a stable situation. I was downcast, as I wanted to see huge improvement. However, those on this site assured me that I should be happy with my results and that I should sit tight, as it might take longer for Ibrance to generate actual improvement. My two primary concerns have been 1) extensive bone mets throughout but primarily in ribs, sternum and L3 and 4, mostly sclerotic, and 2) and enlarged precarinal node. At month 3, the node didn't appear to have changed or might have been a hair larger (impossible to really tell, per radiologist). At month 6, all appeared either stable or improved. The node was noticeably smaller, and all mets were stable or had the appearance of perhaps an improving situation. Great news. MO said that I had received the "best possible outcome and report".
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Husband, I just completed my 8th course of Ibrance/Faslodex. At my first scans (3 months: CT of chest and thorax and a nuclear bone scan) they found a stable situation. I was downcast, as I wanted to see huge improvement. However, those on this site assured me that I should be happy with my results and that I should sit tight, as it might take longer for Ibrance to generate actual improvement. My two primary concerns have been 1) extensive bone mets throughout but primarily in ribs, sternum and L3 and 4, mostly sclerotic, and 2) and enlarged precarinal node. At month 3, the node didn't appear to have changed or might have been a hair larger (impossible to really tell, per radiologist). At month 6, all appeared either stable or improved. The node was noticeably smaller, and all mets were stable or had the appearance of perhaps an improving situation. Great news. MO said that I had received the "best possible outcome and report".
My tumor markers don't give us any information. They're always low so of no use in diagnosis.
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32.5 35.3 28.7 29.5 26.8 27.7 22.6 21.5 24.8 32.2 33.8 26.6 27.2 25.1 0 -
- 32.5
- 35.3
- 28.7
- 29.5
- 26.8
- 27.7
- 22.6
- 21.5
- 24.8
- 32.2
- 33.8
- 26.6
- 27.2
- 25.1
This is the best I could do. These are my CA 27-29 values since starting palbo. They were done every month until about 6 months ago. Then he started skipping randomly some months.
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Husband11- I had "extensive bone mets and bone marrow mets" on PET and a 15-3 into the 1000's. After 2 weeks of Palbociclib 125 mg my TMs decreased 10%- MO was happy, but, surprised. After 2 months TMs down another 1% ("stable") I was switched to 100 mg for 2nd cycle due to very low ANC. At 3 months I had a followup PET which showed "Metabolic improvement or resolution of most sites of bone and bone marrow disease with a few sites of persistent but stable disease. No new metastatic disease". My TMs went up 9% ("possibly dying cancer cells")
I looked at a comparison of my two scans- every vertebrae was involved, both arms, legs, pelvis big time on the first one. All vertebrae, arms, legs and most of the pelvis clear on the second one. I am also on fulvestrant. Will have TMs done again tomorrow and scan at 6 months. Not sure if my TMs will be meaningful to help spot early progression. Z did say that research shows if your TMs are under 50 they are not too helpful.
I know that my marrow is much better because my severe anemia has improved significantly.
Interesting short article in JAMA sept 26 about liquid biopsies- could be helpful in the future. They have made the most progress in a type of lung cancer, but, are avidly studying CTCs and cfDNA in breast, colon and prostate as well.
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Husband11- Another article in JAMA Oct 3- about liquid biopsies- I haven't read this one yet- will later today. I don't know if you have access to this journal, but, I think that you would find these articles interesting if you do.
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Husband, I had a remarkable response (I love saying that!) on my widespread bone mets + one behind-the-sternum soft tissue tumor after 3 cycles of Ibrance > FDG down from 11 to 2.9 on PET/CT.
After 9 cycles, none of the lesions showed any activity except one on the sacrum and the soft tissue tumor. The FDG uptake was only 2.3 on both.
I take Arimidex daily and XGeva shots once each month. I haven't studied a great deal about which drug does what and when. I've decided just to roll with it and thank God it's working!
I pray that your wife gets better and better!
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Husband, I, too, am on Xgeva. Forgot to note that earlier. I just had my 7th dose (I think). MO had initially said that he'd keep me on monthly shots for three months and then cut back to every second or third month (I don't remember which), and then he decided to administer monthly for 6 months before changing the interval, and now he says that he'll keep me on it monthly until he decides differently. He said that he doesn't want to change what's working right now.
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Joyner/Patgmg- did you have tumor markers done also and did they respond in a way consistent with the great scan results?
Patgmg- I laughed so hard about your comment about guns in sewing circles. I sort of thought it would be one of those classic things you say in many bad situations- but, realize it would be an inside joke.
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