Ibrance (Palbociclib)
Comments
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Dianarose, I'm adding my prayers to the others and lots of love and gentle hugs. They have to figure this out for you, it's really not fair and very scary. I'm so sorry for what you are going through.
Z, glad to hear you had good family time cycling. I think you're smart to not worry too much about the CEA. Mine never moves but the CA 15.3 and the CA 27.29 bounce around a bit. Don't wait too long to have scans but in the meantime just keep doing the good stuff you've been doing.
PatG, what an interesting gallery and how exciting for you to be doing this with your granddaughter. You're both very talented! You will really enjoy being off Ibrance for awhile, I can't believe how much more energy I have already. I pray the MO is right and a break on occasion is a good thing because I'm sure loving it. I have enough other stuff going on with my erratic BP and sore feet, etc that I needed this break. I don't know anything about phenergan for nausea but zofran works a little too well. They gave me a couple of doses in the ER on Monday and I was so constipated if was awful. I've used it in the past but I forgot what happens so didn't take any precautions against that this time and of course, no one mentioned it to me at the ER.
More later, I have to sign off, my IPad is acting up again and I have a sticky keyboard
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Oh my. I remember the Zofran constipation like it was yesterday instead of 16 years ago. I had to develop quite the regimen when I was on chemo at that time and still ended up with thrombosed hemorrhoids. I swore they could use that drug as a weapon of mass destruction!
DianaRose, my thoughts and prayers are with you. They just have to figure out what's going on and give you some relief.
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Off to the cancer center again this morning. More blood work then we will go from there. Was able to keep food down last night so good start. I am sure the tumor marker will determine the course of action. Please keep praying as I need them all. Tha
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Z - 8 hours of good wholesome family fun sound like a dream come true! So glad you were feeling well enough to enjoy the time with your family!
Dianarose - I am praying for you! I hope they figure out what is going on and can help you feel better. This has been a rough few weeks for you.
Patmcg - what a wonderful gift you and your granddaughter have! I checked out the gallery and there are some beautiful artwork there!
Faith - What a terrible thing this constipation is! I hope you get on top of yours quickly. Speaking of which, I had a rather frightening thing happen yesterday. I have been having the same issue with constipation and as i was relieving that yesterday, I actually blacked out for a few seconds. I managed to stay upright, thank goodness, but it really scared me! What was even stranger was when I came too, I actually felt good! I am going to talk to mo about this at next appointment. I hope you feel better soon!
I am ordering my 24th cycle today. Oh saw the Julie commercial several times this weekend. Told dh that we discuss how unrealistic it is. He laughed, but next time it came on he paid close attention and then said it is a bit unrealistic. No pain getting up in the morning. Lots of differences.
Hugs and prayers everyone
Claudia
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Well another blood transfusion at one. Don't know tumor marker results yet
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My prayer list has been full as I lift each of you up in continued prayer knowing the battles each of us are waging. If you will allow me, I thought I would post a little positive news as a way of encouragement in the midst of the battle, especially for the newbies...
I received an email late last night from my onc about my latest scan. She told me "There is no definite evidence of FDG avid disease. The previously seen left axillary node continues to improve..." She goes on to say "Given the history of possible cellulitis of the left arm, the left axillary node may be reactive" which I think means the node is a little active in response to the cellulitis. I was worried about my arm, but in light of all of the other news, I am ecstatic! I am no Julie, and the fatigue and other ses are as real as ever, but it looks like Ibrance is working so far in my case. Being that I am stage IV, my onc always reminds me that "residual low-volume disease can not be excluded." I get it...the cancer will not be cured, but if we can keep this disease quiet for awhile, I will gladly accept the fatigue. I start a new cycle tomorrow, and I have always been on 125 dose and will continue there as long as my body will allow it.
Thanks for allowing me to share.
Chris
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That is awesome news Chris! I love positive stories! 125mg is great! I could only tolerate 75mg. I am in awe of those who are able to tolerate the higher doses!
Like you my prayer list is long...but I really believe that God listens to us. I also believe that he answers our prayers, maybe not the answers we want but answers non the less. How else could we deal with this monster? Everyday we wake up and don't know what to expect. Just when we think things are going well, we'd wake up to a bad day. But for everyday I have been here for the last 5years, I am grateful!
Hugs and prayers
Claudia
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Intolight I cannot imagine what my life would be like without God in it. Glad for your good news, I hope and pray for the same for all of us.
What is FDG?
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Grannax, according to Google...
FDG is the radioactive tracer used in PET Scans. It stands for Fluorodeoxyglucose. When used in the sentence FDG avid , it means that the nodes or tumors takes up the FGD, also known as Hot nodes. This means cancer.
So, it means there is no definite evidence of cancer tumors seen in the PET scan (no tumors absorbed the radioactive tracer.)
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IntoLight. Good to know since I will get my PET report tomorrow. Thanks.
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Chris-
Fabulous news!!! HOORAY!
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Chris, I'm glad your doctor was up late on a Sunday and I am ecstatic for you! (You might tell the doc that low volume disease cannot be excluded in anyone, not even his healthy self....just sayin'.)
About dear ole Julie...None of us need to compare ourselves to her as she is no more real than the Vogue covers we've compared ourselves to in the past! Julie is, essentially, airbrushed!! However, I do believe that some of us will be cured and will find ourselves going through life without medicine and its side effects. I have friends who have done that with MBC so I know it is possible. I'll be seeing one friend and her 16 year old daughter next week. L. finished treatment for bone mets 18 years ago and adopted her daughter 2 years later. L. has not been in treatment all that time. Is she cured? I'm thinking so!
Let's all expect to be cured by this combo we're on or the next thing about to break! God is still in the healing business. Amen?
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Chris- congratulations. Love hearing good news!
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Got my tumor marker results and wasn't good news. Went up over 50 points. So bummed out. It's weird how this combination works great for so many and then not for some. What sucks too is I have a 11,000.00 bottle being delivered tomorrow. What a wast
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Dianarose - 50 points may not mean anything. The interpretation of TM's is both relative and individual. Don't pitch the bottle without careful thought and consultation. I'd say scans, but I see you are ILC. Tricky business.
On the topic of biomarkers, I got my Biocept CTC results back today. I had my first Biocept test done about 4 months ago. At that time, they found no CTC's. This time they found one, which doesn't sound too bad but bursts my fantasy that the cancer is completely dormant. The problem is that it is cytokeratin negative. A little bit of googling suggests that it is a cancer stem cell. Cytokeratin negative CTC's are associated with a negative prognosis. I'd certainly prefer to have none.
In any case, I'll be re-jiggering my complementary protocol as I go into the fall and approach 2 years on this protocol. Watching the biomarkers. Scans in September.
I have a fantasy this will be over some day, but these kind of diagnostic results put the kabosh on that. Can't be over if I have a cancer stem cell floating around in my blood ...
>Z<
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Zarovka- fifty is a big jump for me. My markers have been reliable when something is going on. The need to have the second naphostomy tube was a big indication something is going on in my belly . Had two scans but like you say with ILC hard to tell anything .
Does anyone know if Faslodex or Letrozole proofed to be more effective then the other in combination with Ibrance? I am wondering if it's not ibrance that fails some of us it if it's the combination
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Dianarose, I'm not sure how long you've been on Ibrance but it can take awhile for results to show improvement. I don't know which treatment is more effective but I believe they use Faslodex when bone mets are involved and maybe that would be a good treatment for you with the belly mets. Don't throw out that Ibrance yet.
Z, I'm sorry to hear about your cancer stem cell floating around, that must have been a real shock to you. However, I probably had one floating around too since 1991 and look how long it took for it to raise its ugly head again. In 25 years, just imagine what great new treatments will be out there. Never give up hope.
Chris, doing the happy dance for your great news. We all want to hear these stories of success.
Keeping all of you always in my prayers.
Faith ( in the future).
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Faith and DianaRose, I am on Letrozole with Ibrance and had extensive bone mets, and liver mets, but no belly mets. My mets are now resolved. I am now curious about cancer stem cells since they have not identified a site of origin for me...
Chris
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Z, if cytokeratin-negative cells are associated with poorer prognosis, I think that means associated with metastasis. Which yes, has happened. But I don't think it has to mean a poorer prognosis relative to others with metastatic bc. What do you think of the idea that some antibiotics can treat cancer stem cells?
http://www.impactjournals.com/oncotarget/index.php...
Thinking of you, Dianarose, and hoping you will feel better soon.
(I haven't kept up posting on this thread since my move to Xeloda, but I decided to catch up on reading it today. I was on Ibrance for about two years.)
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An interesting article about what could be next for some of us:
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Intersting article Pat. The more we know, the more targeted therapy can be refined to fit individual needs per mutations.
Question....anyone been getting high glucose numbers? Mine have increased steadily. I read somewhere that diabetes can be triggered from Ibrance. I may call Pfizer and ask them as well.
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My PET showed that lung and chest mets have responded to 7months of IF ! Hallelujah! Also liver mets showed no uptake! Exceptional response to y90!. More later.
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Very encouraging article, Pat, and wonderful news, Grannax!
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Lindalou, my glucose numbers have also been high on Ibrance. My oncologist hasn't expressed any alarm.
Grannax2, you're our reason to celebrate today! Wahoo! You need a Y90 t-shirt...no uptake is magnificent!
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Shetland -
The data shows that people with MBC and no CTC's have a longer overall survival relative to people who test with 1-4 and even better relative to those who have 5-10 CTC's in a 7.5ml sample. That is survival of people already diagnosed with MBC, from the time they are tested. there is no data on using this information to show response to treatment but I am going to try to use it that way over time, along with other indicators.
My concern is that most CTC's they find are regular tumor cells. Some studies show that regular CTC's are actually not very strong indicators of anything. Mine, however, was (probably) a stem cell which is rare and more strongly associated with progression, according to Wiikipedia. Just putting it out there to try to learn ... a people with experience and great doctors on the thread.
Looking at the article...
>Z<
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So Z, are we to understand that they have gotten far enough to determine based on ctc's, that they can now tell who will do better? If so, I find that extremely encouraging! I also read the other studies from Patmcg and Shetland and I am feeling very encouraged regarding our futures! I do have one simple question, how is this test performed? Is it something I can request?
Dianarose - my mo and I have been discussing what's next... He's thinking we will switch from letrozole to Faslodax and keep Ibrance, as I had 3 Good years on Faslodax alone. So hang on to that new bottle. I sure hope you are feeling better!
Lindalou - My glucose levels did the opposite of yours. Mine dropped down to really low. Both Mo and Pc were not concerned. However, last month's bloodwork showed that it skyrocketed but no one seems concerned about it, so neither am I.
Hugs and prayers everyone
Claudia
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Hi, interesting conversation about CTCs and prognosis! Last year my husband insisted that my MO do a CTC test. She was reluctant but went ahead and ordered it. My blood test showed no CTC. Curious to know if there is any treatment based on the presence of CTCs? If their presence is indicative of poorer prognosis, do the doctors order this test routinely now?
Shetland and Zarvka, thanks for all the information.
Grannax2, great news about the scans! Hope everyone does equally well on Ibrance!
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D3K5 -
Doctors don't generally order CTC testing, although if they do it is FDA approved and covered by some insurance. My main MO will not order it because she does not feel the information is actionable. In other words ,she is not going to change treatment based on this information. I basically agree with her, but I think I can combine it with other information to get a better picture of what is going on, over time. My second opinion/complementary onc will order it for me. He suggested it and has more confidence in the information than I do. My views on the value of CTC's lie somewhere between the two oncs advising me.
Claudia -
You can determine the genetics of the CTC and then use that to inform decisions about therapies that target specific gene mutations. It is one reasonable source of information about the genetics of your cancer. Perhaps a leading indicator, perhaps a red herring. That is one very complicated discussion.
I am more interested in counts of cells and tumor DNA in the blood and whether that tells you very early whether a treatment is working. I believe you can also get information about response to treatment by how the mutations in the tumor DNA change with time. Otherwise, I am not focused on genetics and "personalized medicine" for myself right now.
I follow the personalized medicine discussion with interest, but I am trying to figure out how to get me some badass immunotherapy early, before even US trials will accept me. It's an expensive proposition, so I need to get diagnostic tools that will tell me if my investment worked or not. I don't have raging cancer, yet. My last scans were almost NEAD. so I need fairly sensitive tools.
On a side note, the husband of a friend of mine, the person who scrapped me off the sidewalk after my initial diagnosis, has asked her for a divorce. She has metastatic renal cell cancer. Her husband/caretaker has reached his limit after 5 years. Knowing what they have been through, I am sympathetic to both his position and hers. He wants out and, for him, there actually is a door. What reasonable person wouldn't go for the door? I think we should all do something nice for the people supporting us this week.
Feeling reasonably well, but worried a bit about what is to come ... sleep well everyone.
>Z<
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I'm so thankful my husband of 48 years is not looking for a door. We have been together since we were teens and have been through many rough times...his prescription drug addiction, bouts of anxiety and depression for both of us, my multiple seasons of cancer, the deaths of our parents, a terrible traffic accident. Those were dropped in amongst times of great joy...a wonderful daughter, granddaughter and son-in-law, seasons of perfect health, a shared faith in a loving God, satisfying careers and a wonderful extended family. (We have a little bit of crazy family too like most people!) I wish everyone had someone as caring and committed as my husband and, V, I will take your advice and do something especially nice for him this week! I am so sad for your friend but I'm glad she has you.
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I can't even imagine my DH giving up on me...horrible beyond imagining. I feel for your poor friend, Z. And, as you said, for him. A terrible situation for both of them. I, too, will do something nice for my own caretaker. Thanks to all for the input on CTCs. Things are moving so quickly it's hard to keep up.
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