Ibrance (Palbociclib)
Comments
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Jen - Stable is awesome. Exhale and get on with things...
>Z<
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Jen, that is great news!!! Stable is good and I hope you remain that way for a long time!
((Hugs))
Anita
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My wife's prelim results came back. The bone mets are stable but there are some spots in the liver. Final results are still not out. She is totally devastated. Will talk to doctor next week about options. I am feeling very very low today.
Ibrance worked for no more than 6 - 9 months then.
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Letmywifelive - I'm sorry your wife's preliminary results show spots on her liver. Did you meet with the oncologist to review the results. Since you referred to them as preliminary results and final results are not out yet I can't tell. I'm not trying to give you false hope but spots on the liver, especially if there are only a few and if they are very small could be something other than metastases. Are the spots large enough to biopsy? If you haven't met with the oncologist yet try to stay positive and as another BCO member wrote in the Bone Mets thread, if it has spread to the liver there are still treatments that can knock those mets down. Hang in there.
Hugs,
Cathy
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Thanks Cathy. No, we have not reviewed the report with her oncologist yet. So we will know more in the coming week. The onc just mentioned that she sees spots and the fact that my wife's TM was going up seem to correlate. I really do hope that we find something that keeps her stable for a long time without sacrificing her quality of life.
One interesting thing is that the bone mets seem stable. So I am wondering if the spots on her liver are the same type of cancer or mutated ones.
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LMWL, I posted on the bone mets thread, but just remembered immunotherapy which I was told I didn't qualify for until I had liver mets. Do you have this available where you are? From what I have read, it is very promising & you may want to ask about it. dee
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Dee,
We are yet to discuss the treatment plan with the oncologist. Do you have more details around the immunotherapy plan ? I will take it up with her onc. Thank you for giving support.
Congratulations on you stable results and god willing you will never "need" to qualify for the immunotherapy treatment.
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LMWL, I don't have a lot of information on immunotherapy but I'm including a link to the ACA page about it. The researchers at UBC in Vancouver are doing a big clinical trial with it which is why I was interested. Having just spent 2 1/2 weeks waiting for results, I can truly sympathize with the waiting for some answers & getting on with a plan. dee
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Hello everyone, I've been MIA lately but wanted to just check in and say hello today and welcome the new people and say I'm so sorry you had to find us but this is an amazing group of smart, supportive women. I haven't had a chance to get caught up with everyone, this board has been very active lately but I keep all of you in my prayers always. Claire, just saw your post and I'm so sorry to read of your mouth pain and blisters. Sounds awful! Hope it zaps that met for good! I will catch up with all of you soon.
I decided to give myself a little break from always thinking about cancer over the holidays and do some other things. It's felt really good. My MO gave me permission to take an extra week off Ibrance so I could enjoy the holidays and have the energy to sing in our very long Christmas Eve service. I managed to get through it but I was worn out since I'd only been off the drug for 4 days. Too bad Christmas wasn't at the end of those two weeks since I felt great then. All in all, round # 12 was 2 weeks long with 2 weeks off. I am now 3 days into rd #13. Still feeling good.
I was a little nervous to get the results of my blood work this week since I'd been off the extra week and my tumor markers had gone up a tiny bit the last time. But, all is pretty good. Blood work "ok" per the MO, I would have preferred the word "good" but I'll take ok. My RBC, sodium and a few other things are low, which explains my constant dizziness and fatigue a bit. However, my tumor markers are "good", back into normal range. Yea!
I guess today is my one year cancerversary the second time around. I'm never sure which date should mark this one. One year ago today was the biopsy that confirmed cancer in my nodes and left lung. I didn't find out for another ten days that it was MBC and not lung cancer. It was Jan. 2nd that I had the CT scan that confirmed something there. Anyway, the end of 2015 and beginning of 2016 really stunk!
However, I'm grateful to still be here and feeling pretty good and that the Ibrance is still working. May it continue to work for all of us a long, long time.
Hugs to all,
Faith (in the future)
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LMWL, I'm so sorry to hear of the progression and am taking inspiration and confidence from what others have shared about treatments that can get her back to stable and enjoying excellent QOL. We'll be with you both as you talk with your medical team.
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Just let me say this, thanks to all of you for your posts. Knowing I am not alone is a huge comfort. Thanks, too, for the continued research, esp, from you, Zavorka. While some people want to play the ostrich, I thrive on the research. My MO said to me at our sit-down, 'so, what don't you know?'.
I just took the last pill of cycle 3. I believe that I have handled the side effects fairly well. A bad sinus infection at the end of cycle 2 stalled the start of the next a few days. Then this past week was really bad with nausea & gas - geez oh man, I am such a gas bag!! LOL! After reading some posts here, I think I will switch from mornings to evenings with the pill. At least I won't be at work, stinking up the place! Hubby can move into guest room if he prefers.
I had a scan last Friday and will see MO this Wed. for results. I have had a lot of sternal pain - which is the site of the hot lymph nodes - but it may be continued healing from the removal surgery. I suspect that surgery tore up more than imagined. At least, I hope so!
The discussions about TM's is interesting. I don't know what mine are! 22 years ago, one of my support group friends had a TM scare. She was going to the partner of my MO. So, I asked my MO what mine were and he said that he didn't test them. At that time, he believed that they cause more anxiety than their worth as a diagnostic tool. At tthat point, he did run the test, however, really out of curiosity and said they were fine. I will ask him this week what his current thoughts are.
While I am anxious about the scan results, I am reassured, too, knowing that there are more options available.
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Patchingpeg - I basically agree with your doctor that TM's mostly scare people and are a poor basis for clinical decisions; however, with ILC you best keep an eye on them. Ask him what he thinks about Circulating Tumor Cell testing. We're only just learning what these tests mean, but they might provide a data point for diagnosing the elusive ILC cancer.
Best of luck on the scans. Waiting is just awful. Consider probiotics for improving your colon health. Something odd going on with your microbiome.
>Z<
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On the other hand, my TMs have been absolutely foolproof for almost a decade, through thick and thin. They have been the first indicator of every progression I've had-- five times so far. So while they are not reliable for some patients, others of us totally rely on them for diagnostic clues.
Note that while I originally presented with both IDC and ILC, my progressions have all been ILC.
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In my wife's case, TMs have turned out to be accurate predictor.
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I have ILC and the tumor marker blood test CA 27-29, has been extremely reliable for me since being diagnosed in May 2007 - so for almost 10 years. It was the first indication in late 2013 that my BC had metastasized, when no other scan or test showed any cancer at that time. I know this is not the case for all, but many of us find our TM numbers to be quite accurate. My onc has always said he hates making decisions based on TMs only, but In my case it has been accurate every time I have had progression, which then subsequently the progression has shown up on a scan.0
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I just checked in with LovesMaltese (Carol). She has moved and settled into her new home and a new Xeloda routine. she needs some rads for one met. She is doing well but off the boards to avoid the emotional ups and downs. It's not always what we need.
Back on Ibrance after a two week break due to low counts and holidays. Will be checking counts a little more closely this cycle. If they are very low again, I will drop to 100mg from 125mg.
I took two Ibrance by mistake yesterday. Feeling crappy (headache, shaky) but otherwise alive and kicking. Drank a lot of water and I am headed out for a walk to keep working it out of my system.
>Z<
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Hi Z - please don't ever take 2 ibrance (lol) - the SEs just get worse. Now feel better - we need you! I had to take a day off from jaw rads as the left side of my tongue was so blistered - thus my last round will be on Monday. I did ask the RO if I could just stop, but he convinced me to finish the full 3 weeks. Feeling better today and very keen on what my numbers will be on Friday when I start round #14. Hello lovely Faith - if your RBC drops too low, please discuss getting a blood transfusion - I had one for cycle #2 and it provided a lot more energy.
Remember ladies we can infuse RBC to bolster hemoglobin, but unfortunately not WBC. LMWL - if your wife has progression in the liver - please biopsy if possible. And there is Xeloda around the corner which can really help with liver mets. There are many choices today, so don't get too down. If her TMs are a good predictor, then please meet with your onc to discuss. My "twin" Naturegirl who started the Ibrance + faslodex thread (and the same day I started Ibrance) is now on Navelbine for liver progression which seems to be working after Ibrance, Megace and Madame X failed her. Stay positive and keep walking. (())Claire
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Claire,
Yes we are thinking of getting the biopsy done - especially after reading all the comment here that it's not one of the most horrible procedures.
Thanks for mentioning Navelbine. Will ask our MO. I think the MO at this stage will suggest either Xeloda or some other anti-hormonal. The tricky part will be to continue keeping the bone mets stable as Ibrance + Letrozole seem to be working there
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LMWL, There are patients with bone and liver mets on Ibrance + Faslodex too who do very well. So many options. Looking forward to hearing what your team suggests!
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Hi all,
Since there are many intelligent and wise women on this thread I am wondering if anyone knows approximately how much money raised for breast cancer usually is allotted for awareness? I know 7 percent is usually quoted for funds towards stage IV. There is something going around on facebook about posting a heart on your page to bring attention to breast cancer awareness. Though I know this is well-meaning it is really bothering me and I am feeling the need to educate people about the need for funds for stage IV and the reason why. I would like to write something up on my page but would like to ensure that I provide accurate information. If people are unsure, I would welcome recommendations for what you believe are the most accurate sources.
Thank you!!
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Hi Singlemom - if you haven't done so already you should check out the metavivor.org site. Their mission is to bring awareness and funding to stage iv and metastatic breast cancer. I think their statistics show even less than 7% of funding goes to metastatic breast cancer.
Cathy
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Z I so happy for you! Go to Utah and live life to the fullest
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Hi Singlemom,
I think we need to raise awareness for MBC irrespective of what the investment statistics say. The key message is that, this is the only form of breast cancer that kills - not the early stage ones. So the killer out there is stage IV breast cancerand that's where the funding needs to go in order to save lives.
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Singlemom, LMWL, Animal Crackers.
I am one of those women who was discouraged from getting a mammogram until I was 50 due to those guidelines that came out a while ago. My primary care physician sent me to get a mammogram when I was 43. The technician did the mammogram, but insinuated that I was abusing the system by demanding unnecessary tests. Not being super keen on having a 40lb car battery dropped on my boobs OR getting accused of abusing the system, I didn't get a mammogram again until I turned 50 a couple years ago. And needless to say we found full blown stage IV metastatic cancer.
So that's my breast cancer awareness story. I tried to get screened and I was told I was demanding unnecessary tests. Ooof this brings up a wee bit of rage .... inhale, exhale, move on. I remember very little these days but I remember that technician ...
Regarding MBC research, there is a lot more money spent on MBC than people understand. I am most comfortable with the statistics developed by Adventures with Cancer on inspire. In her analysis, it comes out to 15% to 30%. Also, the investment is increasing. The number of good targets is increasing as well. A good target is one that can improve survival by more than 2 months. That is making MBC a more interesting problem and drives more research. Also, a lot of the new research, like vaccine therapies targets BOTH MBC and early stage BC.
I am all for banging the drum for more research dollars and will join the choir but I think that the amount of research $ spent on MBC is generally understated.
The larger problem across the board, whether it is early stage or metastatic cancer, is what we are researching?. A lot of scientists use cancer research as a means to advance their interest in some specific aspect of cell signaling or metabolism or something. Translational research that brings treatments into the clinics is like applied math vs theoretical math. I think a lot of research in cancer is really pursuing off topic basic research that's not going to wind up being useful in the clinic. I'd like to see more research driven by practitioners.
This is a TEDX talk by Robert Nagourney who developed the functional testing done at Rational Therapeutics. I share his view on cancer research. Specifically, there has been too much emphasis on understanding cancer genomics. I don't think the answer is in genomics. The tumors are too heterogenous and advanced cancer, even in a single tumor, has too much variation in its genetic makeup. However scientists really really like to publish papers about genomics so that is where all the work is done.
I think we will cure cancer by finding some weakness that is common to a specific cancer but independent of genotype. I am guessing the weakness is somewhere in the cancer metabolism or the way it shields itself from the immune system. However, Mina Bissel is a very smart lady who thinks it's in the form and architecture of cancer tissue. The common thread is that the oncogene theory of cancer can achieve marginal increases in survival (thank you ibrance) but it won't get us a cure.
Translational cancer research is also generally driven by what can be monetized by a pharmaceutical company. A lot of important lines of research are not advancing because they can't make money in the current system. I'd like to see that fixed.
In sum, I think we have more of a strategy problem than a $ problem. If you just push dollars into the current system, we'll get more papers about genomics and that won't get us anywhere.
With apologies to my many friends doing bio-informatics...
>Z<
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Singlemom, when I see those posts about hearts for Cancer awareness or share if you know someone with cancer, I reply by saying please give a donation to Metavivor instead of this
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Singlemom, I had a couple of friends do the heart thing. I kindly PMd them and told them it's made up. This is not breast cancer prevention week. It's just a silly thing people think they are being nice by passing along, but it literally does nothing and is meaningless. Also, there is no such thing as breast cancer prevention. It can't be prevented..only maybe detected early.
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Hi Z,
I'm with you. I'm in favor of all kinds of breast cancer awareness. I even believe that everyone who has been diagnosed with breast cancer should be screened for metastases from the get go. It makes my head explode every time I read about someone who has gone through the ordeal of surgery, chemo and radiation only to find out within a month or two or six or even a year that the cancer had already metastasized. My bone mets were stumbled upon in an MRI otherwise I would have gone that route. I was asymptomatic so goodness knows how long I would have gone before the mets were uncovered and perhaps spread elsewhere by then. Sigh... but that's a whole other topic...
Cathy
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Just received the CT report for my wife.
"At least 10 new hypoattenuating lesions noted throughout the liver, the largest measuring 1.5 cm in segment 2/3 (7/64). Additional lesions are indexed on PACS. No biliary duct dilatation."
No sure how bad this is. Any comments welcome.
Regarding her bone mets the comments are :
"Overall stable appearance of diffuse sclerotic osseous metastases. No pathologic fractures identified."
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It has been almost 2.5 months since I've been on the boards. I decided back in October that I was experiencing too many ups and downs from being on the boards, so per the advice of my husband and many friends I removed myself. I am checking back in to give an update though. Last Tuesday I had surgery. Obviously this is somewhat controversial within the Stage IV world. My oncologist, surgeon, and my "team" all highly recommended I do it. No complications and I am at home now resting. I ended up having a single right mastectomy with DIEP FLAP reconstruction (using tummy fat to rebuild the right breast). I then had a left breast reduction for symmetry. It was a HUGE procedure (8 hours) and a tough few days of recovery, but I can honestly say now I'm doing well. Went out to breakfast with friends this morning and happily shuffling around my house these days.
My cancer continues to be in remission. The pathology from the surgery should be back any day now. My oncologist does not plan to scan me again until February or March. Her words: "I think you'll be in remission for a long while." How does she know? I guess she doesn't. But I'll choose to hold onto to that quote. It's easier living with that anyway.
The next step for me is radiation. While it's not 100% certain I will receive radiation, it seems like it's likely regardless of what the pathology shows. My doctors have never, ever used the phrase "curable intent" which I've read on these boards before, but my oncologist did tell me the Friday before my surgery that they are choosing to treat me "like an earlier stage." I say all of this for those whose cases might warrant surgery or radiation. We all know that everyone's case is very unique. Typically speaking those with metastatic disease do not go through with surgery and radiation and "all that." But there are times when it makes sense. I apparently am one of those people. I don't regret for a second having done the surgery and I will race to the radiation clinic if I'm asked. I will always be on treatment, like all of you, but I do believe there's good reason to be aggressive in other areas if your case warrants it.
I hope you all had a great holiday!
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Hello - eelder. I was just thinking of you. I am so very glad to hear that your have proceeded with the surgery and are doing well. If UCSF has decided to treat you as if you were early stage, I would say you have a very positive prognosis. Are you still taking Ibrance/letrozol?
>Z<
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