Ibrance (Palbociclib)
Comments
-
Shoot Hope, well said also, let's do it! We have been quiet way too long! And what the heck is an infrared sauna
0 -
Let's do it! Wish I could lead this, but my energy reserves are a bit low. I will find the energy as soon as this army starts mobilizing, though. Can't believe we've been placated for so long with pink crap!
Remember the old saunas that had the rocks and steam? Well this is a little different heat source, but same idea. I'm sure you've read about fevers mobilizing the immune system. Other countries are using hypothermia to do the same. Anyway, infrared has been shown to expel toxins better than traditional saunas. Traditional saunas produced about 97% water and 3% toxins, whereas infrared sweat contained 18-20% toxins and less water, lessening the burden on your organs, such as skin and liver to release these toxins. Then, your bodycan function better, along with your immune system. Studies are showing impressive pain relief too.
0 -
Have started the ball rolling. Sent a PM to the Moderators to add a new thread....we are a huge voting bloc....time to take back our power. Myra
0 -
New thread LETS GET ORGANIZED. Myra
0 -
Nice, Myra! I'm headed over now!
0 -
Great idea, Myra!
I just returned from my onc's office, where I returned to see if my Granulocyets# has come up enough to restart the Ibrance. It has been two weeks now since my last Ibrance pill. Last week my count was 900, which wasn't high enough in his mind to restart. Well....today they were at 800! I have no idea how that happens. So, no Ibrance for me today, boo. And I'm worried.
I go back in a week for another test. My onc did lower my dose to 100mgs, based on these results. I hope this helps. Otherwise, I don't know if I'll be able to stay on the med.
I wish he would just let me go back on it anyway, as some of you here have been able to do so I could at least see if it would work. I'd even agree to live in a bubble.
All of my other counts went up- RBC, hemoglobin, WBC, Platelets...just not the one he cares about.
0 -
oh darn Sandilee. Myra.
0 -
Following links from the Let's Get Organized thread to the Where is the Outrage thread, I came across the website of Metavivor, which I realize I haven't checked out for a long time. There's some very interesting information and research going on, some of which has been funded by Metavivor donations.
One article of particular interest to me and probably to other women here who are experiencing a low neutrophil count due to Ibrance is this one:
http://www.metavivor.org/research/research-news/ho...
It 's interesting that the very cells that fight disease in our immune system can be co-opted to promote disease. Cancer is for sure a sneaky beast! I find it fascinating that they are experimenting with lowering the nuetrophils intentionally to decrease metastasis.
0 -
Hello sisters, I got my first Faslodex injections today and took my first dose of Ibrance. When did you all start feeling SE? And what about hair? Did you lose some or all? Nervous but very hopeful. Susan
0 -
I'm with you, Romansma! I want to see my kid graduate, get married, and have babies! Yes, Adnerb, at least 30% to MBC research and cures! But how can we be activists when we are just struggling to take care of ourselves and our families? Who will help us? I suppose if more people knew the truth about that 30%... My plan is to last long enough for immunotherapy to become available.
0 -
Pearlady, you were wondering about CVS Caremark when we were talking about Ibrance storage temperature. Yes, Caremark will ship it to your local CVS if you choose. I went in to mine and talked to the pharmacist there. She said the Ibrance comes in the same packaging and probably on the same truck, and usually gets delivered in the morning. Delivery trucks often deliver to businesses in the morning and residences later in the day. So I chose to pick up my Ibrance at the local CVS and spare it riding around in a hot truck all day.
0 -
NorthTexas, If you feel well today after your Faslodex injections, you will likely continue to feel well. Sometimes I was a little tired that evening, but not always. I experienced bit of hair loss the first couple of months (noticeable only to me) but then it came back entirely. With Ibrance, only fatigue around the second week. The problem with the Ibrance is keeping your blood counts high enough to continue taking the drug. That seems to be an issue for most of us, but apparently many docs are lowering the dose if it continues to be a problem. Good luck to you! Faslodex alone can work for years for many of us, and if it increases with Ibrance, horray!
0 -
Thank you Sandilee! I love you gals!
0 -
ShetlandPony thanks for the information about CVS Caremark. I am going to call tomorrow to arrange it. Especially with the summer coming.
Hope I know some women that have gone to Germany for Hydrotherapy. I would love to do it. Someone on these boards mentioned that they offer it in Philadelphia at Jefferson. But I imagine it's not covered by insurance. Do you know about the Biomat? It produces Far Infrared rays and gets very hot. My onc has them in the treatment room but i am one of the few that use it. I actually bought a half body mat that I use not as often as I should, but I do love the sweating. My oncologist has recommended it for his patients but some women say they can't take the heat and don't like sitting on it. To help kill the cancer I'll put up with heat. You can search on the Internet. The best ones are said to be made by Richway
Now I'm inspired to go sweat.
0 -
Today was my first lab and this evening my onc called and said I needed to stop the drug. When my counts come back up I will restart with a lower dosage. Are there many of you able to handle the full dosage? I would like to get feedback on what dosages others are on? Do you start and stop this drug frequently?
0 -
Max Otto, I am on the 100 mg and usually get to day 18 before having to stop. Myra.
0 -
Yes, Pearl, I was reading about the Biomat. I'm going to use the spa here for a bit to see if this gives me any pain relief, energy, etc. if it does, I may look to invest in one for myself.
Day 2 of cycle 4, down the hatch! Maybe the heat and sweating will help my toilet dwelling blood counts!
0 -
Hi, im posting this on behalf of my mom. She was diagnosed with stage 4 breast cancer with bone mets 2 days ago. Despite annual mammogram scans, she was still diagnosed at such an advanced stage. She is coping fine and staying very positive, both me and my younger sister we are trying very hard to stay positive also. We are meeting the medical oncologist again on Monday to discuss about treatment options, she did brought up palbociclib during our last meeting and a possible participation in one of the palbociclib clinical trial (btw we are from singapore) but it seems that my mom's blood test shows that shes anaemic and something else (the doctor prefer to elaborate on monday) that might not get her a place in the trial. Right now there are so many uncertainties and its really hard to not feel helpless.
0 -
QiXian Ho,
I'm sorry about your mom. Please know that there are a lot of different therapies that will help beat back your mom's cancer, so don't feel bad if she can't do the palbociclib- I'm sure there will be a treatment plan that will help your mom. Palbociclib(Ibance) isn't all that easy even for those of us with normal blood counts to start with. People are living with bone mets for many years, so don't give up hope. You'll learn a lot by reading some of the other threads dealing with your mom's diagnosis. Hugs to you.
0 -
Thank you sandilee,
Since palbociclib has already been approved and its currently available commercially, assuming that the insurance is willing to bear the cost of it, what would be the difference between taking it in a trial or not? What should i be looking towards given her diagnosis, what is the best case scenario?
0 -
If you are in a trial, you won't be able to choose if you are on the trial drug or not. The trials are blind, meaning you are put randomly in either the trial drug with a standard drug, or a placebo with the standard drug.
What you will want to do is to talk with her doctors and find out which options he or she recommends and why. Discuss the side effects of the various treatments, the doc's reasons for choosing one over the other, and do what feels right to your mom. There is usually more than one "right" choice, especially for someone just diagnosed. Best case scenario? That her cancer stays in her bones for 15+ years and she is able to keep it stable with various hormonal and targeted treatments. This is a real possibility, so have hope and encourage your mom to participate as fully as she is able in the decision making.
0 -
sandilee, thanks much for the link to that article. It is indeed fascinating and could explain why the responses to Ibrance can be so different from patient to patient.
Some of my post round 2 numbers are back and my ANC is in the tank - so I'm hoping that by driving the neutrophils down sooooo low I'm at least targeting the right thing. Fingers crossed.
0 -
Good article, Sandilee. I'd be interested in knowing more about how Pablociclib measures up where TAMs and TANs are concerned. Very complex, indeed. Cancer sure is a smarty pants, eh? Reading that article raises so many more questions. It makes you question what all the numbers truly mean. Is it good or bad that your ANC is low and same for tumor markers. Could an increase in that marker be good, at least in the short term. I dunno! On that note, I think I need some coffee!
0 -
Sandilee thanks for posting the article. Really great article, but it raises so many questions for me. It would seem that what is happening in most cases is that the cancer eventually outsmarts the drug, no matter what drug we are taking. At this point, I'm hoping that the Ibrance/Femara will outsmart the cancer for as long a time as possible and that in the meantime, more new drugs will come along. Or even better, a way to control the TAMS,TANS and Neutrophils.
0 -
All, I need your help! My Ibrance was denied by insurance. In part due to combo with Faslodex but also because the person submitting it stated that I was Stage 2, premenopausal and didn't include my ER/PR and HER2 status. I saw the appeal letter which didn't correct any of the mistakes and didn't state anything about why Ibrance should be approved with Faslodex. It was in bad shape. I have taken on drafting the appeal letter myself. I want to ensure I give myself the best chance of having this covered. Do any of you have suggestions about successful appeals? Any advice is appreciated. I know many of you went through this process already. My circumstances are a little different than most because I am seeking Ibrance in combo with Faslodex which has not yet received FDA approval.
Northtexas and any others on Ibrance/Faslodex, did you have to appeal your insurance company or did they automatically cover it?
0 -
JFL - My insurance denied Ibrance the first time because the administrator wrote my stage as Ia, which was my original diagnosis, and the insurer didn't read the attached pages to see that I had metastasis. Once that was straightened out, it went through quickly.
Your trouble may be the stated stage more than the Faslodex, as the drug has not yet been approved for early stage cancer.
So chances are that when that is corrected, along with your hormonal status you will be able to get it! Much more likely. Who is your insurer? It seems like the only hang up is the Faslodex, and the lousy appeal letter submitted.
I might call Pfizer and see if they have any suggestions. There are trials with Fas that are going well. If you could site these to the insurer, it might help. The drug company should be able to help with their knowledge of ongoing trials. Good luck!
0 -
Gosh JFL, I have no answers for you. Perhaps because Fasolodex has not been released for pairing with Ibrance. I was very lucky, I had no problem getting approved with the Femara
0 -
Sandilee, that article was fascinating. I am in the field though, and I had a ton of questions after reading. Is my ANC good or bad? Is that why most of us who have low counts do not get infections usually when our counts are low. I know some of the MOs have noticed that their patients with low counts have been ok. Do the TANs come in and take over? Wow, lots of questions. Myra
0 -
I noticed in my blood work yesterday that while my granulocytes # was low (0.8), my monocytes and lymphocytes were abnormally high. That has never happened to me before this medication. Very strange, but they may be filling in for what's missing.
I got a call from my onc's NP this morning telling me she sent a prescription to CVS for an antibiotic to keep on hand in case I get a fever. So they are still concerned about my resistance. But I feel great. Damn neutrophils!
I'm going to be very upset if they don't bounce back next week.
0 -
I was only able to complete two full cycles of IBRANCE/FEMARA before taking a rest for 3 weeks . I was able to continue the femora during this period. I go to the Oncologist Tuesday to see the blood levels. was thrilled that the TM's dropped to 6 before I stopped.
0
